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Need advice about prednisone self help

  • 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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7 years 4 months ago #63431 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
Hmmm. I didn't see that years ago when I researched it (7 to 21 days). It's hard to say whether you had it or not, but you definitely had some kind of reaction. Yes, the rash would be raised and hive-like.

If you went to the ER, they would give you steroids to treat it.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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7 years 4 months ago #63432 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
Steroids? ugh
Only if it doesn't resolve really soon.
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7 years 4 months ago #63433 by poseymint
Replied by poseymint on topic Need advice about prednisone self help
Janet, sorry about the bombshell! oops I was talking about myself and Sjogrens. First thing my rheumatologist suggested when I was diagnosed with Sjogrens was that Rituxin would be an option. yah, sounds like a great idea! haha

But you know, Nplate can cause really intense dry mouth. Sometimes I wake up in the morning practically choking from the dryness- that is Nplate. I know because it has always done that, only one day per week (some weeks nothing) and it comes with an NPlate headache. The headache and dry mouth resolve pretty quickly when I start moving around and get some coffee.

For me, Sjogrens is not so bad, it remits and flares up. If I didn't know I had it, it wouldn't be too noticeable. It is a dry mouth, dry eyes, sometimes lack of sweating. I had those symptoms for a few months last year but then it went away and haven't had much. I started taking Plaquinil 200-300mg per day then so that probably helped too. I use Act dry mouth toothpaste- don't know if it does anything. I also sometimes use Oasis eye drops- love them. And a dry mouth lozenge- Ludens. Also have used Spry mouth spray. Hope you are doing better today!
  • 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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7 years 4 months ago #63434 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
I knew I had Sjogren's when my eyes got dry. I've always had dry mouth - as long as I can remember. Anyway, the dry eyes got really bad. I wear contacts so I went to the eye doctor and spent a fortune on glasses. I thought that would help to wear them all the time. I also got a script for Restasis. Turns out that my eyes felt worse with glasses. It was intolerable. My eyes felt so dry that they were gritty and felt puckered. I could barely see by evening and eye drops only worked for a few minutes. Restasis didn't help at all; I gave that three months to work. I went back to the eye doctor and she said that the contacts were probably helping because they blocked the air from hitting my eyes. I wake up every morning and my eyes are blurry for hours. Weird. I guess this is as good as it gets. Oh, the Spry gum works well. I use that when I can't have a drink handy. Otherwise, I have one with me every where I go.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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7 years 4 months ago - 7 years 4 months ago #63443 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
A quick update... I haven't intentionally been ignoring our conversation. I've been in the hospital for 3 days, 2 of them ICU. Just got home a few hours ago and back to internet access. "Rituxan reaction". They stopped short officially calling it "serum sickness", but honestly... I believe there are spectrums of symptoms to most illnesses .. There's an official list of symptoms, but no one gets them all and no one gets every one in the same degree of reaction.
In my mind, my biggest fear about doing this experiment (serum sicknes) has come true - until - I tried to write some emails to friends and family, finding I've significantly lost brain speed and hand skills. Having weird visual disturbances
So If anything I write here doesn't seem to make sense, please excuse. It feels like I had a stroke.
So NOW, my biggest fear is I don't get these importatnt faculties back at all. Did the fever do it? Did the Ritaxan do it? I've been poisoned but not shown the antidote... I don't know. I was walking fast through a store the other day, not hunched over a walker, thinking about how great it felt to just get on with life without the troubles that most people my age do. That feeling has been stolen from me. I'm not optimistic, not stoic, or resilient like you Sandi.

Gotta go. I'm beat, but I'm home!
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 4 months ago #63445 by dru
Replied by dru on topic Need advice about prednisone self help
Janet
So sorry about what has happened to you. It is good that you are back home and hope you feel stronger soon.
After dealing with your ITP all these years you are probably a lot more resilient than you think.
Dru
  • 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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7 years 4 months ago #63449 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
Janet - First of all, I'm so sorry that this happened to you. This is why I repeatedly say that Rituxan is a heavy duty drug not to be taken lightly. I know that it took you years to decide on this drug and you definitely had reservations. You did not take it lightly.

Second, I am not stoic or resilient. Rituxan changed my life and not for the better. Yes the ITP went into remission, but I am truly disabled from the reactions that I had. I'm not far off from needing a walker, at 55 years of age. I use shopping carts to walk in most of the stores. I might pretend to be stoic, but I can barely function on a daily basis. It's a good day if I get three things done on my list.

I can't tell you if this will pass or not. Did they give you any treatments in the hospital? Please be patient and give yourself time to recover before you worry too much. Drug reactions take time to go away. You made complete sense in your post!
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 4 months ago #63454 by mrsb04
Replied by mrsb04 on topic Need advice about prednisone self help
How awful for you Janet. Wishing you a speedy recovery
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7 years 4 months ago #63460 by momto3boys
Replied by momto3boys on topic Need advice about prednisone self help
I'm so sorry to hear about your hospital stay. Your post was perfectly coherent, if it's any consolation. I hope that with time some of these immediate effects will lessen and disappear. Please keep us posted as you heal.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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7 years 4 months ago #63476 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
Thank you all for your kind wishes. I'll respond in detail later.
I'm back in the hospital as of yesterday morning. More to follow.
  • 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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7 years 4 months ago #63477 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
Oh no! Yes, please update us when you can.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 4 months ago #63487 by dru
Replied by dru on topic Need advice about prednisone self help
So sorry you are having such a tough time.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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7 years 4 months ago - 7 years 4 months ago #63507 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
Sandi, poseymint, mrsb04, momto3boys, and dru. Your psychological and experiential support have been blessings on my heart. Thanks from its depths.

First off - the Sjogrens. In the dry atmosphere of the hospital, my mouth was desert-dry, cottony feeling. Often, I'll wake in the night and my eyelids won't slide over my eyeballs so I can open them. Sort of the same feeling as when you wear contacts too long and they stick to the orb. It's a diagnosis I won't pursue seriously yet, but may mention to the GP I'll be seeing next week. There's certainly a lot more to that disorder than I ever imagined. Thing that scares me most is losing teeth. Mine are ugly and old, but they're thankfully still attached to my head, and I have always intended to keep them as long as they're useful.

I'll try keeping this succinct, but fair warning - that's not how I usually roll. Guess you've noticed. ;)
On the evening of the second Rituxan infusion, Tuesday the 15th, Fever spiked to 102.5 and only got worse. NSAIDs didn't touch it; it stayed between 100.5 and 103.2 day and night. Joint pain set in on Thursday p.m. Rash on my legs appeared to be petechiae, but I later learned my count had never been below 170 during that time. Could barely move a muscle, couldn't turn in bed, couldn't fasten clothes. Rash changed in appearance, becoming redder and 'puffier'. Lymph nodes in neck and head swelled. When I began to vomit on Sunday night, I went to urgent care. They gave me one liter of fluid, drew blood, did a flu swab, gave me anti-nausea med. The morning dawned no better, so I went to ER. They took me right in based on my dreadful appearance. Spent one night on the oncology floor. After BP tanked, I was sent to ICU for the next two days. I'm going to try to find out what that fateful BP was, but I seem to recall systolic low 70s, diastolic perhaps 50 or lower.

ICU is a nightmare in this hospital. No sleep for the coma-less. The wedding gowns, the vacations, the shopping, the baby-making, kids or not ... All subjects of intense debate among the nursing crew at 3 a.m. while I'm potentially dying without any sleep whatsoever or ever having anyone asking after my needs for hours . It's the only part of my 6-day stay that I deemed completely intolerable, and I lodged a formal complaint.

The official diagnosis for these three days - serum sickness and hypovolemia dehydration.

The morning after discharge, I woke to intense vertigo, weakness, retching, and diarrhea. I attributed the latter to all the bags of antibiotics I hadn't needed in the first place. The others were so intense, DH and I couldn't begin to wrestle me into the car to get back to the hospital, so we called 911. That issue turned out to be apparently unrelated BPV. A brain MRI didn't show anything serious. I was given anti-emetics, no more fluids (thank the lord!), and valium for the vertigo. Never heard of that drug for that condition, but it's apparently "a thing". I have a walker for the continuing unsteadiness, but it seems to be slowly improving. I don't plan on inviting "Mr. Walker" to my 4th of July BBQ.

My nightmares have mostly gone, my fingers are again connected with my brain, and I can complete a sentence without drifting off to sleep. Feeling a lot better, but still not "well" - and a lot wiser for this experience. Never, ever again will I turn my gut feelings off. I knew years ago that this drug would be a bad idea for me, but I trusted the doc's word that it would be fine. Never again.
The hugest irony of all? My count is now over 400 without having NPlate for two weeks. Ask me if I think it was worth it.
  • 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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7 years 4 months ago #63509 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
Janet - I'm so glad you are doing better! I've been worried. You described the symptoms much better this time. Yes, now it sounds like serum sickness. I couldn't turn over in bed either.....it was worse than having a baby with no pain meds. It's a shame that they can never seem to diagnose and properly treat serum sickness. Every single time someone here reports having it, it is never diagnosed and treated properly.

Hopefully, you won't have any residual problems like I did. I was pretty much okay after the first time; it was after the second time that I never got back to myself. What a nightmare of a hospital stay! I totally get the 'was it worth it' comment.
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7 years 4 months ago #63512 by momto3boys
Replied by momto3boys on topic Need advice about prednisone self help
Thanks for the update Janet. I've been pulling for you!

Your stay in hospital jail sounds about as pleasant as one would imagine (i.e. not at all). I'm so glad that you were able to break out and are back home now. Hopefully you won't have any more scares and need any funky medications for a while. Fingers crossed that you are able to ditch Mr. Walker in time for your bbq! Your experiences are definite food for thought on the Rituxan front. Just when I had mostly convinced myself that I was being paranoid about avoiding it, you injected a dose of reality of the seriousness of our treatment choices. I'm so sorry again that you had to go through all of this. I'm really hoping that you can at least ditch the ITP treatment rollercoaster after this whole nightmare! Take care.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 4 months ago #63514 by dru
Replied by dru on topic Need advice about prednisone self help
Janet
So sorry to hear about this horrendous experience. But I was so relieved to read your post and know that you are okay.
After all your reluctance to try Rituxan your nightmare did come true, but you are getting through it. It sounds like you are getting stronger each day and will be off the walker soon.
Hope you can relax, take good care of yourself and feel better!
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7 years 4 months ago #63516 by poseymint
Replied by poseymint on topic Need advice about prednisone self help
wow Janet, so glad you survived that ordeal and are home! Unbelievable that people on this forum can diagnose serum sickness where as doctors and nurses are telling you its the flu and allergies! Rituxin really should come with some instructions for doctors and patients. It probably does, who knows- I was never shown any information, any precautions, what to watch for after an infusion, etc. Hopefully your count will stay up and you'll get something out of this. And your experience is very helpful to others here- thank you for sharing. You are now an expert in serum sickness! Not what you were going for I know.

Hope you get over the vertigo soon! It clears up on its own for some people. I had BPV benign positional vertigo off and on for 40 years- we call it BPPV around here . ugh not fun! But I found an ENT who healed it with the Epley maneuver. That really works if you find someone who knows what they're doing. It still comes back for me so I get adjustments every year or so, but its 90% corrected. For Sjogrens: my dentist checks my saliva now at each visit. He tells me if I have enough or whatever. weird I know, but it doesn't seem to have affected my teeth. I go to the dentist a bit more often because of Sjogrens- 2-3 times a year for cleaning.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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7 years 4 months ago #63521 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
Sandi, I've actually had two babies without meds. Fast labors, no time for epidurals or anything else. Trust me, this was far worse, because there would be no happy baby at the end to "erase" that pain memory.
Question for you, if you know: Are all of the biologic "-mab" drugs similar in their risks for susceptible people? For example, if some day down the road I thought Humira might do some good, would I face the same reaction risk to it?

I saw my hemo yesterday. He seemed humbled. At the least, I think he'll no longer assume the patient can't possibly know anything about a treatment he thinks is a sure fix. He seemed relieved that the MRI showed no sign of PML. That would really have complicated his life as much as mine. I forgot to ask him the biggest question I had... Whether this will be officially be reported to the FDA as an adverse effect. That's voluntary, isn't it? I want it on record. There's good reason a recently released list of the 50 most dangerous drugs includes Rituxan at #2, and I wouldn't want that to go unnoticed.

Momto3boys... Thank you for your empathy. I can see how well you're able to understand everyone's varying situations. The way you express it so well is golden.

Dru, I'm sorry to have lost track of your current situation. You had the desensitization and then four infusions last time I looked. Or have I got that wrong? Has it boosted your count? Mine yesterday was 553. That was full-strength dosing, one partial infusion and one full. Yet my hemo refused to consider the low-dose option when I asked about it beforehand. I probably would have gotten a response from half a bag, and maybe a far less adverse reaction.

Poseymint... I was given the consent and release paper to sign on the day of the second infusion. That's how sure they were I'd be fine. Now that I look back at that first day, I think in awe about the tricks they use to force a body to accept a poison it's vehemently trying to reject... Benedryl, steroids, et al. "We have to get it in", they kept saying.
I know about the Epley exercises., but I didn't know an ENT would be the pro to see about them, so thanks for that. My husband had a bout of BPV that resolved on its own without that therapy. I'm working on strengthening my neck/shoulder muscles now. It just feels as if my head would be less prone to over-movement if they were stronger.

So, time to get dressed. My plan for the day is to try and salvage some bedding plants I bought two weeks ago. The thought of going the summer without my beloved flowers and butterflies saddens me. Hope I'll be able to make the best of it.
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7 years 4 months ago #63524 by momto3boys
Replied by momto3boys on topic Need advice about prednisone self help
I'm happy to hear that you are thinking about doing some gardening today! You are hopefully on the upswing and maybe kneeling with the plants will be better with the vertigo. The happiness at seeing your flowers later will also surely help with your recovery!

Great news about no PML signs. Ugh, I don't even want to think about that. Registering an adverse effect sounds like a good thing to do after what happened to you. Too many doctors prescribe Rituxan mixed in with a cocktail of steroids/TPO-RAs and all kinds of other things without really pausing to think. More caution and thought beforehand is called for, and I'm sure that adverse effects are underreported. Go for it.

Happy gardening!
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 4 months ago #63525 by mrsb04
Replied by mrsb04 on topic Need advice about prednisone self help
Janet what a dreadful time you've had. Hopefully now onwards and upwards. Enjoy your gardening. I always find it to be good for the soul. Over here in the UK patients can report medication side effects on line. I bet the FDA have something similar
  • 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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7 years 4 months ago #63526 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
Janet - I had two babies with no meds also. One was very long, but it was still easier than serum sickness!

As far as the 'mab's', supposedly we would only have a problem with the ones with mouse genes. I thought 'mab's' were mouse genes, but apparently not, they include human monoclonals too. However, I am not willing to risk using any biological, ever. I had a doctor who was trying to push Benlysta on me and I refused several times. They all have side effects a mile long and I always seem to have bad reactions to drugs that only make things worse. I've started to refuse all new medications and will not add any to my list unless it's life saving.

My Hemo did not report my reaction to the FDA. I did it on my own. I asked him and he had no intention of doing it. Side effects to drugs are severely under-reported. If a certain side effect does not appear on a list, never assume that side effect is not a possibility.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 4 months ago #63527 by dru
Replied by dru on topic Need advice about prednisone self help
Janet
Yes I did have the Rituxan de-sensitization and then 3 more Rituxan treatments. At each one I had to sign a form that listed possible side effects such as serum sickness, etc. there are a lot! A nurse called me each day after the infusion to see if I was having any issues.
My platelets were 19k at the first infusion, 275k at the second and 136k before the 4th infusion. I’m going to see my doctor Friday. I am guessing my platelets are at least 200k. I have a love hate relationship with Rituxan and would not ever have it except that it works for my hemolytic anemia too.
Hope you were able to do a bit of gardening- that is good for improving your mental and physical strength too.
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  • 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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7 years 4 months ago #63540 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
I hope you're doing better, Janet. I came across this article last night and thought of you.

pagesix.com/2016/01/20/behind-the-arthritis-drugs-being-blamed-for-glenn-freys-death/
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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7 years 4 months ago #63541 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
That's interesting, Sandi. I didn't pay much attention when he passed and had no idea. I just did a search for the specific drug and found his manager declined to name it for legal reasons. I guess people take risks according to how much pain they have to live with. My hairdresser considers Humira to be her miracle. I've never felt, and never will, that Big Pharma is transparent about risks.

I'm still dizzy, but I've concluded that this isn't simple BPV. It's an eye problem called nystagmus. I feel drunk and off balance riding in the car in traffic or walking through busy stores where there's a lot of movement. Having difficulty reading, too. The consulting neurologist noted nystagmus but still diagnosed BPV. I'm not getting attacks of nausea anymore, and quick head movements aren't causing trouble, which is why I don't think its BPV. So I'm going to see an ophthalmologist in two weeks. Hopefully, I'll be improved by then, or if not, he can help.
The bad news? I found this regarding Rituxan and eye disturbances including nystagmus. It suggests to me the damage could be permanent. Scroll to "Cerebellar dysfunction/Ataxia" and tell me what you think, if you have time.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4979320/

It's outrageous that your MD refused to report your AE!!!
  • 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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7 years 4 months ago #63544 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
Wow, Janet, I don't know what to think. Have they considered POTS as a possibility for the dizziness?

I think Glenn Frye was using Humira. Meds like that can be a miracle drug until they they're not and the problems start. ALL of those drugs raise the cancer risk and I wish I had stayed away from them. I've used Imuran, CellCept, Methotrexate and Rituxan. Never again. If they had worked for the pain, it might have been worth it but they did nothing and only caused horrible side effects. I'm not up to trying any more.
  • midwest6708
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7 years 4 months ago #63545 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
Not sure. POTS is different from orthostatic hypotension, right? They did test for OH when I was in the hospital, measuring BP three times after shifting positions from lying, to sitting, to standing. Negative.

I feel more sure of my footing today. Not using a walker anymore in the house; just being careful of sudden moves and keeping a wall or heavy furniture within reach. Would have to test myself again on a busy car ride or shopping trip to see if that's any better yet. Maybe I'm just trying to rush things. Considering how dreadful I still felt last Saturday, this is Nirvana. Still, if I end up with some kind of permanent brain injury because of this... Shudder to think it.

Sandi, I'm sure you've given a lot of thought to what you'd do if you came out of remission now. Care to share what you might do? Or maybe you don't want to sway anyone in their own decision... I'd understand if you don't.
  • 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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7 years 4 months ago #63546 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
It doesn't seem like POTS then if your BP doesn't change with positions. I hope it's not permanent too, but you're right, you need to give yourself more time to recover.

I have thought about what I'd do if I came out of remission. First, I would not treat until I had symptoms which was usually under 15k. If I did need to treat, I'd go with Prednisone. IVIG - waste of time. Win-Rho - didn't respond. Rituxan - haha. Imuran and CellCept - been there, done that. N-Plate and Promacta - not with APS antibodies. There is only one thing left that's tried and true and kills my other birds with one stone.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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7 years 4 months ago #63549 by EmilyK
Replied by EmilyK on topic Need advice about prednisone self help
Janet
Oh my goodness i am so glad to hear you are on the mend! What a horrid experience.
Emily
  • midwest6708
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7 years 4 months ago #63554 by midwest6708
Replied by midwest6708 on topic Need advice about prednisone self help
It suddenly seems to me that prednisone might be the least of the evils, too. Not enough good choices, especially for people like you and Dru who have complicating additional abnormalities.
I'd like to think I'd be able to try Promacta next, but realistically, I might not be able to afford it. My main concern isn't what to do next. It's getting over this dizziness. Worried isn't the right word to describe it.

Thanks so much for your kind words, Emily.
  • 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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7 years 4 months ago #63559 by Sandi
Replied by Sandi on topic Need advice about prednisone self help
One day at a time, Janet.
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