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Rhema Appt 13 years 2 weeks ago #28

  • tigereyes
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Im not sure where to post this since there is no longer a topic for Lupus. But Ill post here either way. I met when the new rhema today and I really liked her. She has been the first dr to ask me whats going on. She sat and spoke with me for over an hr. She thinks that I do have lupus and its smoldering as she put it for the past 3 yrs with the other 2 drs treating my symptoms (not very well in her opinion). She doesnt think I should be on this high of a dose of pred. Shes worried about osteoperosis. Doesnt feel that the dose of cellcept that I am on is really doing what it needs to do--the dose is too low. She would like to switch me over to Imuran--but this all depends on my liver enzymes and this will be gradual start with a low dose imuran and taper out the cellcept. So far my joints look good, nothing inflamed--but thats due to the prednisone. She ordered a whole battery of bloodwork, to get her baseline. But overall Im very happy with her and how she works. Of course she will be calling my hema and discussing everything with him and getting his opinion prior to do anything. Either way I have some kind of autoimmnue stuff going on, even if its not lupus she still wants to follow me.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re: Rhema Appt 13 years 2 weeks ago #29

  • Melinda
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Glad to hear you like your new rheumatologist - and great to hear she will be in touch with your hematologist, good for her!

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Re:Rhema Appt 13 years 2 weeks ago #36

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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It's always good to have a doctor you feel comfortable with and one who listens. It sounds like she's thinking and working to help you feel better and away from danger.

I was also told I had "smoldering" lupus when I was diagnosed in 1993. I was diagnosed with ITP in 1983 and lupus symptoms started about 6-8 years later.

Most rheumatologist's would like to see their lupus patients reduce a dose of prednisone as low as possible, preferably zero. It's good the rheumatologist is looking out for you long term consequences of prednisone. Good luck with treatment, and I hope you find something that works for you.

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Re:Rhema Appt 13 years 2 weeks ago #43

  • tofer
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Kim that is always good news to feel like your are being heard. That your doctor has some new ideas and that maybe there would be another way to view what is happening in your life. Good for you Kim I'm glad things went well for you.

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Re:Rhema Appt 13 years 2 weeks ago #55

  • mendenmh
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Please keep us up to date on the switch to imuran, if you do make the change.

I just switched over (a week ago) from taking 6-thioguanine to imuran to control psoriasis and psoriatic arthritis. So far, I have seen no bad side effects. I take 100 mg/day. I am hoping that it will have a side effect of keeping me in ITP remission, too.

Marcus

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Re:Rhema Appt 13 years 2 weeks ago #57

  • tigereyes
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From what I understand the Imuran is a better drug then cellcept but is more toxic to your liver then the cellcept. I got a call late last night to call in the AM, wonder if some of my labs came back--Im sure it was the CBC and plateles are below their normal.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 2 weeks ago #58

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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Not necessarily, each patient is different. We see that in ITP, where one patient responds to rituxan or another treatment and another patient with what appears to be very similar ITP, does not respond to the same treatment.

I had no problems with imuran and it did nothing for my lupus or ITP, cellcept didn't do much either, although it did seem to help hold my platelets stable, they were not above 30 with 3000mg of cellcept. Imuran at the highest does didn't even do that and my lupus flared while on both drugs.

Regarding liver enzymes-my Alk phos was elevated with cellcept, but never elevated with imuran, although I was on cellcept longer and began cellcept after almost 20 years of managing autoimmune disease, so it could have been the long term use of toxic drugs.

I spent almost 8 years on cellcept, with elevated Alk phos, but after about a year off cellcept, my alk phos is normal, as are all my liver tests. I guess that means it's reversible, even after almost 30 years of toxic drugs, which should be good news for anyone starting or continuing these drugs.

My lupus was very severe, I had a stem cell transplant for autoimmune disease, so I have had an over load of toxic drugs in my medical history. So far (fingers crossed) no major problems, except for osteoporosis and bone problems due to long term use of steroids. I always kept my steroid dose as low as possible, because I felt they were very damaging to my body, maybe more damaging, which is why rheumatologists call imuran and cellcept "steroid sparing" drugs. Although toxic, maybe not as bad as what steroids do to you.

I would never say one drug is better than another drug when treating autoimmune disease, you just never know who will respond to what and sometimes a patient will not respond to a drug used several years ago, but on repeat trial, they do respond. Sometimes they do respond to a drug, but it stops working and they have to go back to a drug used previously. Alternating treatments to stay one step ahead of autoimmune disease.

I've learned to say "never say never" when treating lupus and other autoimmune diseases.

Kim

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Re:Rhema Appt 13 years 2 weeks ago #61

  • tigereyes
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Kim,
Its great to get feedback from someone who has been there. The reason I never went on a higher dose was my liver enzymes went so high. Im just hoping to get this rash under control and keep everything in check. Small steps right?
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 2 weeks ago #62

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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Right...just one day at a time.

What type of rash do you have?

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Re:Rhema Appt 13 years 2 weeks ago #63

  • tigereyes
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Ive had this rash on my checks, Ive had it in the past and it has gone away but recently it has come on pretty strong. Im really rosey as I put it. The dr commented on it and it gets worse when Im driving or near the sun. 2 weeks ago I broke out in this horrible rash while at the park--burning welts almost, but the welts werent raised, just red and blotchy. She said its sun sensitiviy and to make sure to use a good SPF sunblock and avoid the sun as much as possible. Kinda hard when you live in southern cali but Ill cover up as much as possible.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 2 weeks ago #65

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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She's right a good sunscreen works to manage sun sensitivity rashes. Also, get a few cute hats and have some fun with that. I wear hats a lot in the summer and people came to know me by my hat wardrobe. Often gifting beautiful and funny hats to me. I don't wear the funny one, but it's fun to laugh at them when I receive them. I don't wear hats all year long, because I live in north eastern Wisconsin and it's dang cold and gloomy here in the winter. I wear winter hats, that keep my ears warm, but makes a mess of my hair.

Are you on Plaquneil? Plaquneil helps skin rashes too.

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Re:Rhema Appt 13 years 2 weeks ago #70

  • julia
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There is another blood test they are supposed to do before starting Imuran but i cant remember the name of it. I think its an enzyme It rules out a problem that makes sure the Imuran wont work something like 100x stronger dose than it is. The call might just have been to get this test done.
Ive been on Imuran for 2& half years now and have had no probs with it and kept my counts up lovely!
Good luck
Julia

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Re:Rhema Appt 13 years 2 weeks ago #72

  • tigereyes
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Ive been on plaquenil for over 3 yrs now. The only side effects I have had is stomach upset. But that too comes and goes.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 2 weeks ago #79

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Jen:

I always felt that you had Lupus too and have no idea why you were not properly diagnosed. I'm glad your old guy retired and you have a new doctor. Maybe good things will come of it.

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Re:Rhema Appt 13 years 2 weeks ago #83

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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That's good you're on plaquenil...rashes might be worse without it and it generally helps joint pain and fatigue

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Re:Rhema Appt 13 years 2 weeks ago #86

  • tigereyes
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I think its always been in the back of my hema mind that I have something else going on. My counts were down to 20 today without a drop in the prednisone. So there is definiatly something going on. They both agree it is some kind of connective tissue disease. It does kind of frustate me that for the past 3 years Ive kinda been pushed along. Today the dr had 2 med students with me, they seemed very eager to ask questions and ITP and all my other issues. One of them looked my age and had so many questions. So I guess Ill know more in 2 weeks after all my labs come back and they give me some options for treatment. Sadly they both feel that rituxian is no longer a treatment option for me. The rhema does think it may harder to dx everything since the rituxan may start working.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 2 weeks ago #102

  • Stangie11
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Sorry to butt in, but I was curious about what other autoimmune disorders you have going on. I have myasthenia gravis, ITP, and tendencies of lupus and MS, but have not been diagnosed with those. It sounds like you deal with quite a bit and are more knowledgable than me on all this. I have realized quick that we kind of have to learn up on this stuff by ourselves because the combination of disorders throws doctors for a loop. And every person responds differently to different meds. Hope you don't mind. Thanks

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Re:Rhema Appt 13 years 1 week ago #135

  • tigereyes
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Stangie,
I have only been dx with ITP and connective tissue disease--which in itself is a catch all for what seems to me when they cannot come up with a definite dx. I deal with joint pain, this rash, stomach issues, swelling in my feet/ankles, fatigue...these dont all happen at the same time or even for a long time. But it seems that I have somethng else going on other then just my low platlets. I cant seem to stablize like I have in the past which is what is sending me off to other mds. Im usually a kinda go with the flow girl and well Ive come to the realization that I NEED to take charge of my medical care. I cant keep going on with well maybe...or its ok today.

I think the most important thing is to be get all the information that you can and present it to your doctors. You cannot make an informed decision on your treatments until you know what treatments are available to you--along with the treatments you have to understand the side effects and if the benefits outweigh the risks.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 1 week ago #183

  • Stangie11
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Kim,
You sound like you could write a book about autoimmune diseases and treatments. I got a headache reading through the list of stuff you've tried. Thank you for the input. I currently treat my ITP with steroids and am considering Rituxan. I am confused about how a low dose steroid could be worse than all those toxic choices, but that is what everyone says. I am just beginning to play the game. I have Myasthenia Gravis too, but I feel overwhelmed with other symptoms that go beyond both of my autoimmune disorders and wish that one doctor could tell what was wrong with me. That seems really far-fetched though. I realize how new and complicated all this stuff must be. For now, I thank God everyday that I am here and capable of raising the 3 girls God has given me :)

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Re:Rhema Appt 13 years 1 week ago #184

  • Stangie11
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Well I am trying to figure out what all these treatments are and how to play the game. I am a very go with the flow girl too. I have always assumed that the doc knows best, but now it seems that we have to pay attention to our own bodies because there is too much going on with these autoimmune disorders and each person responds differently. I appreciate your advice. Currently steroids still keep my count up good, but I am trying to decide if they are worse than Rituxan. I had a splenectomy 8 years ago that sent the ITP into remission until now. So I wondered if Rituxan following a splectomy is safe. The steroids also help a little with the fatigue and the confusion and thinking troubles I have from fatigue. Thank you for your help. Stangie or Angie

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Re:Rhema Appt 13 years 1 week ago #192

  • Sandi
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Angie:

I have been on low dose Prednisone for nearly 6 years. It started out as 5 mg's but I'm up to 10 now. My Rheumatologist is on board with that. She give me a script for 100 5 mg. pills per month. On bad days, I take 15 or 20 mg's. Seems to be the best way for me to manage symptoms and function.

I tried CellCept but couldn't tolerate it.

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Re:Rhema Appt 13 years 1 week ago #249

  • tigereyes
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This damn rash is killing me. Today I was so horrible that I almost took another 10 of prednisone to see if that would help. Today was unually sunny on my way into work and it just went downhill from there. My arms then got blotchy and burned, then my scalp started to burn. I ended up getting some benedryl to try and help and well it didnt really help that much at all other then make me sleepy. I have no idea why this is getting so bad or how to make it better. Sorry guys Im just frustrated and had a bad day :dry:
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 1 week ago #256

  • Stangie11
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Thank you Sandi. Are you experiencing any adverse side effects to the prednisone? I feel that I prednisone might be the best case scenario for me too.

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Re:Rhema Appt 13 years 1 week ago #268

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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I have been on steroids since the day I was diagnosed with ITP in 1983, with a only a few times of remission, or a choice to not use steroids. Once in 1984-86 remission and another 2 years in the mid 90's, when I just made a decision to not treat my ITP. I decided not to treat my ITP and just lived with counts below 10k. After about a year of no treatments, I noticed symptoms of fatigue and joint pain that would come and go and as time went on the symptoms became worse, until I finally saw a hematologist about my ITP and the other symptoms. He ran lupus tests and what had been lupus pretty much in remission, became lupus with a very high ANA and DsDNA. This necessitated a rheumatology follow up and began treatment for lupus and ITP. I've been on steroids pretty much non-stop since then, along with a host of other treatments.

I think by letting my lupus get so bad, I ended up with refractory to treatment lupus and ITP, progressing to APS, blood clots and lupus symptoms that ended up causing disability and I stopped working in 2003 due to the symptoms of fatigue and pain, along with the ITP, I just couldn't handle the stress of work anymore.

I think if I had kept on a low dose of prednisone, or other lupus drug, I might have avoided the higher doses of toxic drugs. I don't know for sure, who knows really. I guess since I developed more severe lupus after stopping all drugs, I think lupus got worse. Although, even after starting back on medications for lupus and ITP, I continued the downward spiral, so it could be I was always on this downward spiral and ITP diagnosed in 1983 was the first symptom. It could be it progressed faster because of the 2 years of no treatment.

Prior to stopping all treatments in the mid 90's, I had intermittent episodes of joint pain and fatigue, but they would last a few months and subside, so it was hard to put everything together. I had times where I'd get a facial rash and other rashes, but they also cleared up, despite sun exposure, so I could never figure out what the rashes were from, until I got the high ANA and DsDNA in the mid 90's. I guess I was just too busy to focus on the intermittent annoyances and ignored them, until they got constant and persistent. I'm not so sure ignoring the symptoms was a good idea and I probably should have been on plaquenil or other drug, such as low dose prednisone to ward off the severe flare I experienced.

I'm currently having a major problem with rashes and itching, which no one can seem to diagnose. My lupus tests are stable, with a negative ANA and DsDNA, but I continue to have a low level of RNP and Sm autoantibodies. I'm in remission, but with some lupus activity, because I still get joint pain and fatigue. 2 months ago I stopped plaquneil, because that can cause itching, I stopped other drugs too, because I was disparate for relief from the itching. It seemed at first I had some relief, but it flared again, so I think what probably happened if a cool down of the rash and itching from a round of higher dose steroids, which just knocked it back for a while. I don't think it was medications, so I've started back on all the medications I was on, along with 3 allergy meds to help manage the itching and rashes. Seems to be working, but I still flare every other day or so, where I'm miserably itching. I see an immunologist currently, because my rheumatologist left, but will follow up with a rheumatologist in a couple of weeks.

I'm not in the sun, as there isn't much sun in N.E. WI in winter and it's too cold to really be out in it when we do get sun. I also get rash and itching on unexposed areas of my skin, so it's some type of systemic autoimmune process, which I'm afraid might be lupus related.

I've started back on plaquenil, because I'm afraid of being off it. I've continued with 5-10mg of prednisone, but seriously thinking about upping it more, although I already have problems with osteoarthritis and bones are shot. I broke my sacral 2 years ago and that was with taking fosomax for 5 years prior. I'd like to avoid as much steroids as possible, but probably because I've been on them for so long and don't see any time soon getting off them completely. I manage them and take as few as possible, but that means I live in pain and with fatigue. Since I don't work, I can manage the stress pain and fatigue causes and I can rest when I need to. If I was working, there is no way I'd be able to manage my days without 10-20, pr even 30mg of prednisone.


My rheumatologist seemed ok with my managing steroids on my own and always wrote a script for prednisone. My hematologist was OK with it, but probably not as sure and understanding as the rheumatologist, so he left that up to me and my rheumatologist to manage.

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Re:Rhema Appt 13 years 1 week ago #280

  • Sandi
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Jen:

I'm sorry to hear that. Rashes have always been my big fear and so far, I haven't had any. I hope you can get it under control soon.

Angie:

No, I don't have any side effects from Prednisone, but I've been doing it for so long I don't think I notice. I DO notice when I don't take it...I'm unable to function. It's like my whole body shuts down and my brain gets numb. My body also gets incredibly stiff and I feel like the Tin Man.

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Re:Rhema Appt 13 years 1 week ago #286

  • tigereyes
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Ok I dont know what to do. Im itching and burning. Last night in my sleep I scratched my arm so bad that I broke the vessels under the skin and it looks like a someone grabbed me and I pulled away. My head is covered in scabs from scratching in my sleep and my nose keeps bleeding. I keep getting puss filled pockets on my face that once one goes away 2 more pop up. Im really having a bad week. Im so tired and even with an ambien Im not rested. I have a dog event this weekend and Im not sure if I should even go. If I dont go I lose my entry fees and I was really looking foward to going this weekend. I see my hema tomorrow and Ill bring up the itching and burning. Im not sure what else to do, cortosone cream and benedryl cream doesnt do anything. With a dose of 30mg of prednisone should I be having any of this going on? I feel like a zombie here at work and dont want to ask to leave early. I leave early every friday for blood work and now will be coming in late on a certain day to do my rhema appts. Im not sure what else to do. :(
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 1 week ago #287

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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Are you taking anything for it? Allegra, Zrytec, other antihistamine drug? You can try Sarna lotion, although it's clearly a systemic problem and the cream will be very temporary and might not even work. I find that it does give me some relief, although it doesn't last longer than a moment. I just keep applying it, so I don't scratch too much. I've also woke up with blood all over my sheets, so I know I'm scratching at night. With the Zrytec, I notice I do sleep a little better, but in the morning I'm really groggy and don't get moving easy. I also take Zantec, a GERD medication, but it's an H2 Histomine blocker, so it helps with itching. I take that 2 times a day, along with Allegra twice a day and Zrytec at bed time. I'm also on 5mg of prednisone, but even with all these drugs for my rash and itch, it still bothers me, just not as much. If I miss a dose, take it later or to early in the morning, I'm bothered more at night, so I take it late morning and at bedtime, so the morning dose helps keep me from itching throughout the day and into the evening and the bed time dose keeps me asleep and not itching too much. I notice that I start to itch more around the time I take the morning dose, at 11:00.

Have you had the rash biopsied? It should be, so talk to your hematologist about getting a biopsy, or just make an appointment with a dermatologist who can biopsy it. You need to find out if it's a lupus rash, hives, or other autoimmune rash. Although, getting it biopsied might not confirm anything and you'll still have no clue, but if it's vasculitis or lupus, you'll need treatment to knock it back, because vasculitis in the skin can mean you might have vasculitis in other organs. Lupus rash that first appears, or gets worse, could mean lupus flare and possible internal organ lupus attack.

Creams won't do much, because it's systemic...pick up some over the counter Allegra and Zrytec and see if that helps. The combination of drugs I have now is about the only thing that gave me a little relief. I know there are other drugs the immunologist talked about trying if I don't get relief from these drugs. There are some immune suppressant drugs and he also said Plaquenil would help, which is why I went back on Plaquenil. If you're on Plaquneil, maybe a dose increase for a while. He suggested 400-600 daily for me. I started back on 400.

Good luck tomorrow...I know how you feel, itching is the worse, anxiety provoking when you can't scratch. I can't scratch my legs, because I have chronic clots and my legs swell, so when I scratch, I end up with infections and I think that has made my problem worse, because I'm always fighting a bacteria that gets under the skin when it breaks from scratching. This might be what's happening with you too. Each time you break the skin, you're introducing bacteria, which your body has to fight off and with autoimmune disease, your body over reacts. It's a vicious circle that needs to be broke.

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Re:Rhema Appt 13 years 1 week ago #288

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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I also use ice packs, which help, but it's so freaking cold, I end up freezing. Try that, but not too cold. In the summer I slept with ice packs, but can't do that in winter.

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Re:Rhema Appt 13 years 1 week ago #291

  • tigereyes
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The thing is this came on so fast. i had the reaction 2 weeks ago and now I burn, itch...Kim thank you for the suggestions, im not sure if the benedryl helps because it knocks me out or if it actually does something. I will bring this up tomorrow and see what he says.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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Re:Rhema Appt 13 years 1 week ago #295

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I really feel bad for you two. I can't imagine how awful that is. I have burning skin all winter long, but not the itching.

Jennifer - I am going to suggest something really weird. I rarely believe in alternative treatments, you know that. But have you looked into Mannose? When I was at my worst with a high dsDNA had nasty neuropathy, I bought some. By the time the can was finished, the neuropathy was nearly gone. My dsDNA has been negative since. I do still have other Lupus symptoms, but they are managable. It's expensive, but other than that, can't hurt anything. I sometimes think about trying it again.

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