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  • Kim
23 Feb 2010 17:38
Replied by Kim on topic Hypersensitivity reactions in lupus
I thought of you.

I don't have a specific, constant trigger. I just never know when I'll have a hypersensitive reaction to something I eat, do or medication I take daily. Some medications are clear triggers, such as narcotics, heparin, sulfa drugs, while others, such as Advil or Tylenol will cause me to itch, but some times it's not any worse than what I experience on a daily basis. I tell you I was absolutely thinking I was going crazy, even considering an antidepressant to see if it helped.

The other day I had itchy bumps on my face, along my hair line and down my jaw line and my hands itched, but no bumps, just really red and stiff, after I was out with the dog for a while, talking to a neighbor. But, that doesn't mean it will always happen. Sometimes I'll be sick, with an upset stomach and cramping nausea, or itch more after eating cheese, chocolate or wine and other times not. Same with shell fish. I was making myself nuts with trying to figure out what the triggers were, finally I just gave up.

The immunologist said that I'm waxing and waning symptoms, based on the autoantibody production and degranulation of mast cells. I'll always have some symptoms, such as inflamed sinus, eyes itchy, runny nose or eyes. Cough, wheezing, itching and other symptoms of allergy, just never know how bad or what will flare.

He said it's not common, but seen in lupus patients, although he also said you can have this without lupus and isn't sure it's actually lupus related, or a primary autoimmune disease. I think what he was saying was to try and calm my fears about lupus/ITP/APS returning. My ANA is negative, as is DsDNA and APS, so I hope this is the only autoimmune disease I develope, although this is unpleasant, I guess I could learn to live with it. The combination of allergy medications he has me on work well and my symptoms are relieved. I do think the allergy medications raise my blood pressure though. I was doing well with normal BP and that was without my BP medications, but now my BP is going sky high, even with starting back on the BP medications at higher dose then I was on a few months ago. Now I have to go see my cardiologist to get another medication to manage the BP. I can never seem to eliminate or reduce medications and when I add one, I end up adding 2 or 3, if not more, just to counter the new medication. So, although the allergy medications are working, I'm struggling with something else. Argggg....it never seems to end!

You should go see an immunologist and see if that helps your rash problems, maybe a combination of allergy medications would help you too.
  • PennyLane
23 Feb 2010 16:31
Newly diagnosed w/SLE+ITP was created by PennyLane
Hi everyone,

So, I've been diagnosed with SLE for 1 month, and I have found so much information in reading through the threads here. I was diagnosed on my 26th birthday, and have been reading about the disease since. I've found that the more I read, the more questions I have. Some of the questions I have are appropriate for my doctors, but I'd like to share my story, and maybe get some input from all of your experience. I apologize for the lengthy story that follows, but I want to get some of these questions off my chest!

[Quick background- I live in Canada, and am in the thesis-writing stage of an MA, so I'm lucky to have a flexible schedule and quite a bit of time to hopefully get better.]

I really can't pinpoint when my more general symptoms began, but I definitely started noticing changes in my energy level and mood last winter. It was also this time last year that my hands started showing more severe Raynaud's-like symptoms when I got cold. I've also been losing more hair since last spring, and this summer I was getting Raynaud's hands even in the frozen aisles at the Supermarket. I seemed to get tired really easily, after doing something as simple as the dishes, and I didn't feel excited to do much, but tried to push myself anyway, going to the gym up to five times a week, and then feeling useless for the rest of the day.
In September my gym membership expired, and I didn't renew: we were looking seriously at several properties, and knew we were getting a dog, so I wanted to wait and see what my routine and location would be. We then visited my home for Thanksgiving (Oct. in Canada). Our trip was great, but exhausting! When we were there I noticed my left great toe was sore, but I attributed it to too much hiking and dancing at a friend's wedding.
Arrived back home, and moved into the house. My toe pain came back, and was accompanied with pretty major swelling. I saw the campus doctor, and she sent me for blood work and x-rays, suspecting rheumatoid arthritis. The blood work only showed slightly positive ANA levels, which the doctor said could be the result of any little infection of some inflammation. She wanted to get me in to see a rheumatologist, but there's a severe shortage, and up to a 2 year waiting list in my province. My tests were monthly, and by December, the toe pain was gone, and was replaced with some swollen digits, sore wrists, ankles, and painful arches in my feet. Every morning was a struggle to get out of bed, and I had to go down stairs sideways, barely able to turn doorknobs most mornings. The campus doctor sent the rheumatology requisition form, telling me to expect at least a 6 month wait, and I started Arthrotec, which didn't really improve the joint pain. I was so depressed at the thought of further deteriorating while waiting for my appointment.
I went for my monthly blood test Friday Jan 7, and the results came back that my platelets were 59. So I got a call the next Monday asking me to get tested again the next day; on Tuesday, I had my blood drawn, came home, and got a call that the platelets had dropped to 8, and it was then that I noticed little red hemorrhage points on my hands and wrists. I had to get to the ER to see a hematologist waiting for me, and was told to pack for a few days (this is the day before my birthday!).
Over the next 24 hours I saw several hematology and rheumatology residents who all had different opinions, but finally the rheumatologist came to see me, and she and the hematologist confirmed I have lupus (SLE). It was also discovered through xrays that my hands are showing signs of osteopenia, or bone thinning. Very thankfully, I have never (yet) shown any lupus skin manifestations, which may be due to the very little sun we see here. I stayed in the hospital for a week, as I developed a terrible stomach flu after being there for a few days.
The criteria I fulfill are: ITP, inflammatory migratory arthritis, positive ANA, anti-double stranded anti-DNA, anti-smooth muscle antibody, and the Raynaud's.
I was started on a mg/kg dose of Prednisone (about 70mg), and have tapered 10mgs/week recently, as my platelets have risen. I'm now down to 40 mgs. I have an eye appointment in 2 weeks, and then I'll begin Plaquinil. I've been doing yoga once/week in a class for folks with limited mobility, and writing down everything I eat. I avoid refined products, including all white sugars and flours, red meat, alfalfa, and am eating between 1500-2000mg sodium/day. The only pain and stiffness I ever have now is in the arches of my feet, my right hand digits, and my left pinkie knuckle. This pain is for the most part much less great than before Prednasone. I'm a little bit more emotional, sometimes euphoric for silly reasons, but I haven't been raging or sleepless (aside from a few nights). I have seen my Rheumy once, and will again in April. I see my Hematologist weekly, and my platelets are now 159.

SO FINALLY, after that lengthy history, here are some questions I hope you can shed light on!

-Is an ANA of 1:2650 only slightly positive?
-My bloodwork shows 'positive titre = 1:2560 speckled pattern, positive titre= 1:2560 nuclear dot pattern.' In material I've read, it doesn't seem like nuclear dot is common in SLE?
-What does the anti-smooth muscle antibody do?
-I don't have the most recent anti-dsDNA blood work, but back in Nov. it was 4.9, and it looks like the normal parameters are 0-4.2. Is 4.9 fairly low, are they usually higher?
-When my platelets dropped, the blood smear showed that ovalocytes were prominent. Does anyone else have this?


-And last question, how does ITP complicate lupus?? My hematologist is very nice, and answers all of the questions that she can, but she has said we just have to wait and see. I know that she can't predict the future, but have many of you had successful platelet remissions without being on drugs?


Again, I apologize for such a long story and for all of my questions, but I can't wait to hear your feedback!

Thanks so much, and best wishes to you all.

-Penny
23 Feb 2010 13:55
Replied by on topic Not yet diagnosed, but anxious!
Are you having any other symptoms besides the heavy period? What does your doctor say about your cold hands/feet? When will you be able to get an appointment with a hematologist?

You are concerned that your count may be lower than the 47k it was 2 weeks ago - why not go in and get a CBC done and then you will know for sure. I like the quote I have in my signature: Instead of wasting your time worrying about symptoms, just get it checked out. -Nieca Goldberg, MD
  • youngjoan
23 Feb 2010 13:52
Replied by youngjoan on topic Not yet diagnosed, but anxious!
If you look under the 'About ITP' section of the web site, you'll see a link to diagnosis questions. These can help your doctor make sure you have ITP. PDSA sometimes hears from people who are misdiagnosed,so it is important for your doctor to have as much information as possible. The new ITP Consensus report lists the recommended diagnostic tests (see link in the news section of the home page)

Good luck with this.
  • kb04bp
23 Feb 2010 12:40
Replied by kb04bp on topic Not yet diagnosed, but anxious!
Sandi - I don't think 47 is a safe count as mine drastically decreased. I have been reading up though like you suggested and I feel a little more informed.

Cindy - I have yet to see a hematologist yet...waiting for an appoitment. So, no I have not recieved any type of treatment. What scares me is that my count went from 109 to 47 in one month. I has almost been 2 weeks since then and who knows where my count is today.
  • ktonooka
23 Feb 2010 11:57
Replied by ktonooka on topic Rheumatology Appointment
Hi Pauline,
Just wanted to wish you and Caitlin the best tomorrow with the start of Rituxan. Good luck!

Karen
mom to Jordan
diagnosed April 2009
  • Nisse
23 Feb 2010 11:04
Replied by Nisse on topic Hate Waiting!!
thanks for the reply! They just called and told me to up my pred to 20mg. Hopefully that works!
  • eklein
23 Feb 2010 10:56
Replied by eklein on topic Hate Waiting!!
If you aren't bleeding and don't have a history of bleeding, well maybe there is no reason for hospitalization? Lots of us go through our daily lives with counts under 20. I worked for months with counts like that and was never hospitalized. Treating is generally a good idea with counts that low, hopefully the pred will send you right back up.
Erica
  • Nisse
23 Feb 2010 10:45
Hate Waiting!! was created by Nisse
The hema nurse called last night and said my platelets were 16K and to see if I was actively bleeding, which I'm not. Said she would talk to the hema and call me back. I AM STILL WAITING!!! I am on 10mg of pred 1 day a week. I have been bouncing around the last couple of weeks. But this latest drop I went from 38K to 16K. Do you think I will have to go to the hospital? I hope not! I was admitted when I was first diagnosed back in June 2009. Or will they just up my pred and wait and see? This is the 1st time this has happened and I don't know what the next step is or should be. Curious to see what others experiences are/were with this.
  • eklein
23 Feb 2010 10:44
Replied by eklein on topic Hypersensitivity reactions in lupus
Thanks Kim, that seems to explain some of my stuff too. I was outside midday for ten minutes the other day (winter sun, wearing hat and coat) and I got itchy bumps on my face, the only exposed skin. And different medications are giving me coughs, as well as some foods (chocolate!).
Erica
  • julia
23 Feb 2010 09:42
Replied by julia on topic Oh Where Oh Where Is Young Simon?????
If he's still on the stroke ward over here im sure he will be knackered! I think a 57hr wk is an easy one for young docs here!
Julia
  • julia
23 Feb 2010 09:39
Great news i hope it levels out nice. Are you feeling any better?
Julia
  • tofer
23 Feb 2010 09:38
I dont know but 70-80 sounds like not a bad count to me. Plenty of platelets to stop any bleeding & no cancer. Dang sounds like a good year to me. The tests are scary but it seems to me that so far you are doing well.

However that BP is not a good thing. Get out walk around the block.
B)
  • wildroseao@aol.com
23 Feb 2010 08:38
Replied by wildroseao@aol.com on topic ITP and Breastfeeding (Steroids)
Hi Lady with a Crunchy Baby!(?!)

OK, so it was 25 years ago when I was nursing mine, but I was told that having a beer would improve my output--and might even help me relax. However, since I can't stand beer, the doc recommended brewer's yeast tablets.... no help in the relaxation department, but I/we successfully went a whole year! Lots of liquids, of course. And it would have been a big help to have some sort of setup to catch the overspray from side 2 while baby was working on side 1! Ahh, memories---! Ann, Caitlin's Mom
  • Kim
23 Feb 2010 07:51
Saw the immunologist yesterday. He's convinced I don't have any allergies to the environment or foods. He ran tests and ruled that out. He said I have antibodies to my mast cells, hypersensitivity reaction.

It doesn't matter what I come in contact with - everything has the potential to cause an over active reaction, even emotions, stress, etc. That explains why I had a flare when my mom was sick and I was worried, explains why I had a flare before going to China. Bad stress and good stress, resulted in a over sensitivity reaction.

Drugs are a huge problem for me, one day it will be ok, the next I'll take the same thing and have a problem. Foods will do the same thing, but not always, it will depend on what else is going on that might trigger an over sensitivity reaction.

He thinks this is probably been going on the last several years of my lupus, prior to transplant. Might have contributed to why I did ok with rituxan, but than had a reaction to it, but did fine when I had it post transplant. Why one platelet infusions caused a problem, but another one didn't. Why it seems plaquenil causes itching and when I stopped it, I thought the itching stopped, but then it came back. Why I have been going absolutely crazy with itching and trying to figure out what a trigger might be and never could.

I'm on 2 antihistamines (Zrytech, Allergra) Zantac, which reduces H1 antihisomine, along with an nasal and an eye antihistamines, steroid nasal and eye drops. He also wants me to stay on the 5mg of prednisone and if I start to flare with itching, despite all the antihistamines and have any lung wheezing, to increase to 10mg and call him. He has me seeing him monthly, because he wants to make sure I'm not degranulating too many mast cells and causing increased lung symptoms.

He said there isn't much he can do about it, except treat the symptoms and it's autoimmune disease, so if the symptoms get severe again, despite the antihistamines, he'll try immune suppressants. Well golly......

I found this information and thought anyone else who has itching or allergy symptoms with their lupus might find it interesting too.

pathmicro.med.sc.edu/ghaffar/hyper00.htm
  • snowgoose
23 Feb 2010 07:38
Oh Where Oh Where Is Young Simon????? was created by snowgoose
Does anybody know how our young Dr Simon is doing???

I miss him :) !

Vanessa
  • snowgoose
23 Feb 2010 07:35
Down another 100 from yesterday to 647 :) ! Hopefully a trend!

Vanessa ;)
  • Angel85
23 Feb 2010 02:21
Replied by Angel85 on topic Platelet Update
Thanks for the advise Lily, I'll make sure i take it slow when i start to taper under 10mg.
Thanks, i hope it works well for me too, from what i have read, there doesn't seem to be nearly as many nasty side-effects with Nplate as there is with the pred, so i'm happy with that.
  • Bunnie
23 Feb 2010 00:05
Replied by Bunnie on topic Acupuncture/TCM?
My chiropractor also does Accupunture. I find it helpful do a series of treatments when I have insomnia, but it hasn't done anything for my platelets.
  • TheCrunchyBaby
22 Feb 2010 23:48
Acupuncture/TCM? was created by TheCrunchyBaby
Anyone doing this? I used TCM to get pregnant (infertility/PCOS) and now that my son is 6 months old and I was recently diagnosed with ITP, I'm thinking of turning to it again.

Just curious if anyone else was seeing results?
  • Bunnie
22 Feb 2010 23:32
Replied by Bunnie on topic my doc said i might have itp and thats it
Wow, you've gone through a lot in a few short months. Good news, No Cancer and perfect colon.

If your platelets are hovering in the 70-80K range, other than your own need for answers, you won't have to rush to the next step. Most hemotologist don't treat until your under 30K and each of the treatments bring their own set of issues. You can even have emergency surgery with a count of 50, but they prefer above 100 if possible. You've come to the right place for information. You have time to read and absorb the information posted here and have formed your questions when you do meet the hemotologist in April.
  • mirzam_nimu
22 Feb 2010 23:12
Replied by mirzam_nimu on topic Hello PDSA!
That scholarship is exactly what I had in mind. Even when handling my most severe symptoms as a young high school student, I found that such a scholarship didn't seem to exist. I can remember trying one for a hemophilia organization, but ultimately ITP was just too different a condition. Yes, as a young person with a chronic ITP diagnosis, I can tell you how thrilled I was to see a specific scholarship at last.
  • Christine
22 Feb 2010 22:11
Replied by Christine on topic Staying logged in
Ditto from me. :cheer:
  • TheCrunchyBaby
22 Feb 2010 22:10
ITP and Breastfeeding (Steroids) was created by TheCrunchyBaby
I just signed up here, but have been looking for support/info. about ITP and breastfeeding. My son just turned 6 months last week and I was diagnosed with ITP about 2 weeks ago now.

My platelet levels have gone from 10 to 19, 27, 67 last Monday and today are back down to 19. :( I was on Predisone 20 mg 3 x a day, was allowed to go to 2x a day after the 67 count, but now am back to 3x. :(

I am so concerned about breastfeeding. It seems like I am having huge supply issues, I can only assume to due to the steroids, but nothing I can find online will confirm that....my husband has even found things saying that is boosted supply.

I am worried about me and having ITP of course, but my main concern is continuing to breastfeed my son. He's never had formula or a bottle and after experimenting last week when my supply totally tanked, it was a disaster. he wants nothing to do with it and it flips both of us out. I know the stress isn't helping my supply either.

I've been taking mother's milk tea, and special herbs (fenugreek), but have recently read about that having an ill effect on platelets or causing the steroids not to work, so I'm worried that they are down again this week b/c I've been consuming all that. But I have to keep the supply up. It's a vicious cycle, I guess.

Anyway, just looking for some support and see if anyone else is trying to breastfeed through ITP and what you're finding works/doesn't work. Whatever you can help me out with! Thanks :)
  • barrelgal
22 Feb 2010 21:14
Replied by barrelgal on topic colonoscopy
good to hear! I had one to check for possible causes of my anemia with counts at 40. My GI has the office next door to my hema though so when she had questions that I couldn't answer we literally walked down the hall and asked my hema together. She was completely comfortable after that.
  • Sandi
22 Feb 2010 21:05
Replied by Sandi on topic Hello PDSA!
Hi. Are you aware that the PDSA offers a Scholarship for students with platelet disorders? You're welcome to apply when we begin accepting applications. Information can be found here:

store.shoppdsa.org/augecoscpr.html
  • mirzam_nimu
22 Feb 2010 20:24
Hello PDSA! was created by mirzam_nimu
Again, hello. I'm a 21 year old girl who has suffered the symptoms of ITP for the majority of my life. And I can tell you about just the kind of motivation a finding of 19k platelets can do for a person of my age - now that I know the symptoms are here to stay for some time, I am motivated like never before to advocate for students of all different physical abilities / disabilities on my college campus (Santa Clara University). What I've found that's disturbing is specific groups exist to serve people of different ethnicities, sexual orientations, genders, economic backgrounds, religions... the list goes on, but somewhere I found NOTHING offered to help students managing ongoing, chronic illnesses - when it seems we might need the most support of all.
Check out my work on Facebook, I hope to have this novel kind of student group running by the coming quarter. www.facebook.com/group.php?gid=351523597811&ref=mf
  • Sandi
22 Feb 2010 18:28
Replied by Sandi on topic DVT -Deep Vein Thrombosis
No, but further testing might reveal what is going on. Let us know.
  • gilly
22 Feb 2010 17:18
Replied by gilly on topic Infertility & ITP
Thanks so much for that - I haven't been tested but I'll look into it! :)

Gilly
  • gilly
22 Feb 2010 17:15
Replied by gilly on topic Infertility & ITP
Dear Emma

Thats lovely to hear that it worked for you! maybe it'll work for us too :)

They don't think I have Polycystic Ovarian Syndrome but I seem to have problems in ovulating at the normal time, my periods are very irregular.

My husband hasn't got 100% normal sperm but they're not too bad.. The doc said theyre below average. I've seen them under the microscope and they seemed to be swimming very well ;) an amazing thing to see by the way!

We had a feeling the dr. might be over-reacting, although he wasn't saying that we shouldn't go ahead, just wanted to warn us of the risks. Everyone doing IVF has a 1% chance of hyperstimulated overies apparently, its just that he says if I fall into that 1% and have a reaction then I'll probably die.. whereas non-ITP patients would just suffer illness and need to be in hospital for a week or so on fluids etc.

He is trying to arrange an appointment for us to see the Director of the nearest fertility hospital to get a second opinion.

We'll see how it goes...
Thanks for replying, was really nice of you

Gill
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