Simple question

[John]

Richard, if you look at some of my previous posts, will fill you in, but I have more like you, questions than answers. I have the opposite to you. Neuro wants me to stay on Steroids, eye guy says they are damaging my eyes. And my sight is deteriorating. Buts it’s the tiredness and muscle weakness that’s most debilitating. Have just had an echocardiogram that was ok. Few issues, but minor and in keeping with my age group. Awaiting results from Nuclear chemical stress test recently taken and having a biopsy on my thyroid next month as found a 2.9 cm cyst which has not grown bigger from a year ago but never had a biopsy so will know for sure.

All to rule out anything else untoward. Last month had a two big doses of IVIG (as stopped vyvgart, as didn’t seem to be working and reduced my IGG levels substantially)but 3 weeks ago developed a rash on the palms of my hands and slightly on the heels of my feet which appears to be a side effect of immunoglobulin and although I learnt from this site that a few had
developed hives after IVIG, what I have, does not seem to be hives, but something
called Dyshidrotic Eczema, and it won’t go away, even with antihistamine
and prescriptions creams. Anyone had the same? Regardless, my tiredness levels are bad plus I keep developing bad swelling on the top of my left foot with some tingling in the other foot, really weird…..

Just wish I knew what to do and basically to minimize some if not most of whatever is going on?

[Richard Marquard]

Thank you for your input

[Jodi Enders]

Hey there! After several months or maybe even a year of being on 5mg, depending on how slow you have been tapering, most doctors would have you attempt to go off the prednisone entirely, as it comes with long-term side effects and is not designed to be used long-term. I encourage you to seek a second opinion or MG specialist if your doctor refuses to let you go off it despite you voicing your wishes. Some people do experience a worsening of symptoms when they go off it, but most, if the taper is slow, have no issues.

– Jodi, Team Member

[Richard Marquard]

So if I go off the prednisone and my mg symptoms come back, then I go back on the prednisone and I am back to where I started. But, if the mg symptoms do not come back and the Prednisone side effects diminish , I’m much better off and worth the risk unless the mg gets dramatically worse.

Your thoughts?

[Debbie sandwra]

If the symptoms worsen 5 wont help. It will be back to 60 all over again. Starting all over again. Something to think about

[Jennie Morris]

If you do a little research, you’ll see that for some people, like me, prednisone makes them weaker. When I went off of prednisone, I immediately started to improve. That was many years ago but a later neurologist wanted to document my reaction to prednisone so he tried again. Same result – I had significantly more weakness that abated when I stopped

[Richard Marquard]

Thank you for input

[Dean Counts]

I agree with Jodi. I would think they would want you off of steroids especially since there are so many options now

When I was diagnosed with MG about 12 years ago I was in crisis. I had plasmaphersis and a heavy prednisone regime that was tapered for about a year. Luckily that got me to a functional level. I switched to a local neurologist and he switched me to pyridostigmine and I’ve been on that ever since and it’s worked pretty well. Yeah it has its side effects but the steroid side effects were worse, for me at least. I had a thymectomy about 10 years ago and I’ve had a couple of exacerbations which were treated with IVIG but I’ve been stable for several years. He is looking at some of the new drugs because of new research on possible receptor damage but we’ll have to see where that goes.

[steve673]

Neither will mine, my body just fails as I reduce.

[steve673]

I am so weak I now use a mobility scooter locally, and a wheelchair for appointments.

[steve673]

I am on 15 mg daily and 5 mg of methotrexate weekly, mobility is appalling and daily life is a struggle. If I reduce prednisolone, my body just fails.

[steve673]

My vision guys is worsening – muscle weakness horrendous, I stumble, I crash into door frames, my arms are black and blue. This condition is no fun. I do put my story on You tube.

[Richard Marquard]

Since we are all in different stages/severity/etc, it’s hard to look ahead. I am stuck on this plateau and don’t like my “new normal”. Self advocacy has its risks , but, I don’t see a bad downside dropping the prednisone unless the mg gets drastically worse.

[Sharon Haw]

I’m surprised your doctor is keeping you on prednisone alone. I know things are different in Canada where I’m located but the standard protocol here, according to my neurologist, is to start treating MG aggressively in the first year, e.g., mestinon plus starting with at least 20mg daily prednisone tapered off to 0 by the end of the year. Mestinon is continued as the maintenance dose if all goes well. Mestinon caused elevated liver enzymes for me so I was switched to mycophenylate mofetil six months in. I’m not thrilled about having to take immune suppressants instead of mestinon, but I’m hopeful that with so many new treatments on the horizon, another treatment that doesn’t suppress my entire immune system will be available here soon. I guess I should be thankful there are treatment options for MG, but I do empathize with your having to continue on predinisone.

[Coro]

I had same problem as my two neurologists differed. I stopped Pred 2 years ago. Little problems since. Fatigue persists and if I get an infection speech and swallowing affected for a few days. If you are over 60 (late onset) apparently you can survive without Pred or indeed and other MG meds. I was quoted 50% chance of staying off Pred. Always get a second opinion .

[Donald DeLano]

For me, being anti acetylcholine, my Nero has done all to keep me off any steroids. Mestinon at first eventually up to 120 mg 6 times a day, then added CellCept. Did semi ok, finally after3 years approved for Ultomiris, which has been good for me. Eating and talking ok, some throat stress as the time between infusions wears on, frill difficulty balance and overall weakness, but I can cope and continue a semi decent life as long as I plan things

[Frank Morrow]

I was originally on prednisone 20mg/ of day for the first month after starting with prednisone and starting with 20 mg Methotrexate once per week. After the first month tapered to 10 mg per day for the 2nd month then 5 mg for the 3rd month. Then I completely stopped prednisone after my immune modulating (steroid sparing) Methotrexate kicked in fully around 90-120 days.

Side note though I was only on prednisone for 3 months I’ve since developed a cataract in my left eye since 2019.

In my estimation I would suggest that you ask your Neurologist for an appropriate immune modulating or immunosuppressant to replace the IVIG to see if you can eliminate the steroids altogether.

[Debbie sandwra]

Im on 5mg now and have been up and down over 4 years. Any time I was almost off my eyes would start up again with the double vision. Seems prednisone is the only thing that helps with my eyes and I’m on numerous meds. Trust your dr. to know whats right for you. Because you dont want any relapses of your symptoms. Weight gain is very frustrating. Im also on vyvgart which adds more weight then 5 mg prednisone. You are at least down to a reasonably low dose. Good luck with everything.

[Lou DeYenno]

I’ve been tapering off prednisone for six months from a high of 30 mg to 5mg presently. I’m not having any adverse reactions or uptick in symptoms. I’m having a surgery August 21 to have an ankle fused and need to be below 5 mg. I should be at 4 mg by surgery. My other meds seem to be working (Ultomiris and Mestinone) and am praying for continued stability.

FYI: I started with IvIG, Cellcept, Imuran and methotrexate and they stopped working or I had bad reactions and was given 5 treatments of plasmapheresis to get me back on track.

Everyone is different! I’ve had a crisis and a severe flare the past 2 years and am having increased stability since April 2023.

I hope to be off of prednisone for as long as I am able! My neurologist is very flexible , proactive and cautious at the same time. We have a good relationship.

[TheresaG]

Any chance the prednisone caused the reason for ankle fusion?

I ask as im having ankle stability issues.

[Deborah A Dortzbach]

Everyone is different of course, but I do know that my doctor has sought “steriod-sparing treatment” as a long term goal because of the long term side effects of prednisone, some of which I am still wrestling with–osteoporosis. I was tapered off of prednisone which took some years and even got down to 1 mg of Prednisone, as the other treatment was ramped up. That treatment is mycophenolate or Cellcept, usually used to suppress the immune system in organ transplant (but not at such a high dose). It is very effective for me. MG is a puzzling disease requiring some sleuthing, and lots of determination, but I am grateful for the advances made and opportunities to be as productive and “near normal” many, many days. Press on, dear ones.

[DD]

I’m in the same boat with prednisone. I’ve been on 20mg prednisone for 5yrs now, along with 180 mg of mestinon ER twice a day, and 500mg of cellcept a day. The last time I saw my neurologist, I asked about getting off prednisone but he wasn’t really interested in other treatment options for me. I’m seeing a different neurologist next March (I had to wait a year to get an appt) and hope that maybe there are other options. I’m so thankful to be stable and functioning, albeit at about 1/3 – 1/2 of my pre-MG functioning but I’m worried about the long term use of prednisone and its effects. I’m also worried about jumping off into new territory with new treatments that also have side effects or risks with functioning and being stable. But I guess I’ll see what the new neurologist advises.

[Tom Bartlett]

Richard…these are questions that your neurologist can best provide an answer for you. All I can provide is my experience living with MG. I’ve been on treatments for five years. What I have learned is that there is not a singular answer for treating MG. as much as we hate therapies such as prednisone, it can be very helpful mitigating the symptoms of MG. I’ve in prednisone for all of those five years. I started at 60mg and now I’m take 5mg per day. However, I have, also, taken other medications along the way including CellCept and Mestinon, and then Imuran to attempt to replace CellCept. In addition, I have had IVIG, Soloris, and Ultomiris. I’m no longer on those I now receive VYVGART infusion therapy for the past 15 months. It’s helpful but not perfect.

The point is there is no magic pill nor concoction. Unfortunately, MG is a devastating, tricky disease. Treating it is hard. However, we, as patients should never settle for feeling ok.

Use your ADL score. Track it week by week. If there is an anomaly, notate what you did. Present the data to your neurologist. Use your phone/watch to track your walking steadiness, along with your other health metrics. You can see when you struggle. Again notate what was happening. A good example is excessive heat. You can been to better understand your MG.

As for prednisone, I believe we all feel it is an evil drug, however it is necessary. Go to the MGFA website (myasthenia.org) for great information as a patient living with MG. Or the MG-United site (MG-United.com) sponsored by argenx. They have wonderful content including videos of patients talking about their MG journey. And the MGFA has an MG Patient Helpline: https://myasthenia.org/Living-With-MG/Find-Support/-MGFA-Helpline#:~:text=1%2D833%2D647%2D8764, 833-647-8764. MG-United has a program where MG patients can speak one on one with other MG patients.

My advice is to listen to the feedback, but always speak with your neurologist when thinking of making any changes to your therapies.

 

[paul spychalski]

Off of it for some time now but Pyridostigmine gives me the same problems as yours.

Good luck

[Richard Marquard]

Thanks to all for input. I AM late onset and 75 yrs old. I was diagnosed 1 week after my initial attack (feb 2023) and on meds within 3weeks.

In doing further research and reading other MG message chains, it seems that all of us are on various med paths, but we all still have most common symptoms of fatigue, eye issues and poor muscle strength. Some much worse than others. Then we have a variety of side issues that are either mg driven or med driven. Not sure which.

Has anyone ever had full remission with no lingering symptoms or side effect issues? Can we learn something from 100% success? Until then, we are all in the same boat… trial and error, trying new med combos and new med developments with mixed success.

Perhaps we should accept the fact that we are better now than when we first got diagnosed. But, there must be a right combination of treatments (although different maybe for each) that gets us back to our “ old normal”.

Self advocacy makes me continue to search without success…… yet! Let’s keep talking.

Richard

[steve673]

I’m not sure we will ever return to normal, but the thought is a lovely one. We, I agree, are all on differing med paths, and all seem to suffer with exactly same recurring daily issues. My muscle weakness is my worst, especially in my legs, I no longer walk. Driving licence revoked 3 years ago, thrown on the job scrap heep. But daily, I try to keep my spirits up , but it’s very hard. It doesn’t help having COPD, diabetes and Rheumatoid arthritis. It’s always lovely and heartbreaking too, to read others journeys. We are all in this together, and this forum is great for support, WE ARE NOT ALONE! Take care my friend.

[Buckeye]

I’m with you. Seronegative. On Mestinon, Prednisone, Cellcept and Vygart. My main weakness is in my legs. Just can’t be on feet more than 2-3 min. “Can walk, but only lenght of house before weakness takes me down. I have plenty of energy and desire…but no strength. Heat over 75 degrees makes me worse. Oh yes also have Ankylosis Spondolytis. ON cosentyx for that. I can tell soon ad I take that monthly shot…get better for a few days. Dopc says it shouldn’t act tha tfast but it does. Life is discouraging housebound. but I have a great wife, health care, comfortable home and pension, and good insurance. So could be worse.

[George Tvardy]

I started on prednisone 20 mg/daily and had to go down to 10 mg due to headaches. I did OK on 10 mg for a couple of years, and asked my neurologist if I could taper off since I had gotten stable on Vyvgart and Pyridostigmine ER. I slow tapered off of it, but began to notice that I had increased slurring of speech and swallowing issues the last week to 10 days before my next series of Vyvgart infusions began.

Long story short, I now use 10 mg daily the last 7-10 days before my next round of infusions. I’m much happier using prednisone PRN versus having to use it daily. Talk to your neurologist about your options, especially possibly using it on a PRN basis.

[TheresaG]

That sounds like a good option. My neuro increased my VYVgart infusion cycle to 4 on 2 off.

It was amazing. I’m in process of regaining as my deliveries got all messed up. That said, I’ve been weaning off prednisone. Currently at 5mg.

In the past 4 years I’ve had 4 broken toes ( metatarsals) spent months in foot boots.

My bone density is great but the prednisone is causing pitting in the extremities.

Point being the med causes many problems inside where we can’t see.

I get many broken blood vessels on arms etc. imagine what might be happening internally. While a miracle drug and probably fine short term I think critical to get off of it.

To the original poster. Are you in any other med, I.e. vyvgart? If not it would assist to get off prednisone. Just go very slow. My experience is it takes easily a year for stabilization.

[Richard Marquard]

Meeting with my Neurologist today and will take our story re prednisone to him. I trust him. No, he recomended the prednisone over the vy last time as better for me.

Will advise…