Prednisone

[Ishmail]

In August 2022 i had several blisters under both feet i was diagnosed with autoimmune imbalance. I was prescribed 40 mg Prednisone daily for 10 days. The blisters got dry and no new blisters. But 2 weeks after i stop taking the Prednisone i started getting blisters again. I was prescribed 20 mg Prednisone daily for for 1 month, again the blisters dried up and no new blisters. The Doc started tapering my dosage weekly to 15 mg then 10 mg then 5 mg. When i got down to 5 mg i started getting blister again. I am back up to 7.5 mg daily and no new blisters. Currently i dont have any bad side effects. I am stressed out the Doc said i will have to take Prednisone for a long time many years or life time.My question is do anyone have experience taking Prednisone 10 to 5 mg long term and the side effects.

Thank you

[123-go]

Hello,Magburaka. This forum is for people who have Polymyalgia Rheumatica and I am assuming you don’t have that autoimmune disease. I certainly haven’t heard of anyone in this support group having the symptoms you describe. I have looked online and have come up with ‘Bullous Pemphigoid’ which, like PMR, is managed with prednisolone/prednisone and is a different type of autoimmune disease. Is this your diagnosis? If so, there is support for people with your condition and there is information here:

pemphigus.org/support-groups/

Best wishes.

[Ishmail in reply to 123-go]

Thank you for the support group information i will check it out. My Dermatologist only told me i have autoimmune imbalance problem. I had fluid filled blisters only under my feet. I stop getting them when he prescribed Prednisone. I am now taking 7.5 mg daily. I was in the forum trying to find out side effects from low dose long time use of PrednisoneThanks again.

[123-go]

Of course- my apologies. I got carried away looking for info on B P and overlooked your question 😟. Other members here will be along to comment but I will say that side effects of long term, low dose pred can vary for individuals between none, few and several and possibly for male/female. Please keep looking here to learn of others’ experiences.

[Ishmail in reply to 123-go]

Hi no need to apologies your reply was helpful. I think what i have is some form of Bullous Pemphigoid but i only have blisters under my feet. I will ask my Dermatologist about it on my next appointment. Some doctors don't say anything unless you ask because they don't have time or are in a hurry.

[123-go in reply to Ishmail]

I think you are right and yes, Bullous pemphigold can indeed present with blistered soles of feet. Do press for a firm diagnosis at your next appointment so that you know what you’re dealing with. Probably no need to say that as it’s clear that you are proactive in matters of your own health care. Good luck and please let us know how matters progress.

[PMRpro Ambassador]

Whatever an "autoimmune imbalance problem" might be! I suspect it isn't a dermatologist you need but a rheumatologist.

I've been on pred for nearly 14 years, all of it above 5mg and much of it above 10mg - I haven't crmpled in a heap.

[Ishmail in reply to PMRpro]

Thanks for your reply. I was just worried about taking Prednisone long term because i read it has bad side effects.My primary care doctor referred me to a dermatologist. I will ask him if i need to see a rheumatologist.

Thanks

[PMRpro Ambassador in reply to Ishmail]

I suggest a rheumatologist because they probably have more experience managing autoimmune conditions and the dermatologists comment seems very strange. Did he offer a specific diagnosis? If not - you need another opinion from somewhere.

Yes, pred DOES have a lot of side effects but most can be avoided when you know how. It also sounds as if an ongoing dose under 10mg would control the problem but autoimmune diseaase rarely can be cured although some will go into remission spontaneously. Yoyoing on the pred dose is one of the worst things you can do - a steady low dose of 5mg, if that is enough, is far less problem than allowing flares to occur and going back to higher doses.

[Ishmail in reply to PMRpro]

Yes i will ask my primary care doctor for a second opinion. I am now on 7.5 mg Prednisone for about a month.

[PMRpro Ambassador in reply to Ishmail]

The most common adverse effect of pred is increased appetite and weight gain. A good way to limit that problem is to cut your carbs, especially processed carbs, added sugar and limiting some fruits. It really does work.

[PMRpro Ambassador in reply to Ishmail]

This

pubmed.ncbi.nlm.nih.gov/222...

is a bit of an introduction for you - it shows how short courses of pred isn't the right way to to go about managing bullous pempigoid if that is what you have and your doctor should have explained that to you. Used properly, methotrexate and steroids should get it under control but just short courses of oral pred won't

[Ishmail in reply to PMRpro]

I am not on shot course Prednisone. I have been taking it for 6 months. But they lower my dose every month.

[PMRpro Ambassador in reply to Ishmail]

Sorry - that was what is sounded like from your post.

[Ishmail in reply to PMRpro]

If you don't mind how many mg pred are you taking and how long have you been taking it. My big worry is long time use for many years might lead to other health problems.

[PMRpro Ambassador in reply to Ishmail]

As I said above - I've been on pred for nearly 14 years, never below 5mg and most of it at above 10mg. I have no identifiable problems that can be put down to pred. I was at nearly 20 for almost 2 years during the lockdowns and my husband's final illness as I had to be able to function. For the last 9 months I've been on Actemra and have nearly got down to 6mg, still aboot wobbly there though.

[Ishmail in reply to PMRpro]

Thanks for your reply.

[DorsetLady PMRGCAuk volunteer in reply to Ishmail]

I wasn't on Pred as long as many - 4.5 years, but like others on here they were high doses initially or GCA.. so well above the accumalted dose that most Rheumies like. No long lasting other health issues either on them or off them as I have been for over 6 years.

On the flip side you must remember that untreated inflammation from whatever illness you may have can in itself lead to serious health issues.

[SnazzyD]

How big are the blisters?

[Ishmail in reply to SnazzyD]

The blisters are about 1/4 of an inch wide or smaller. I usually get about 2 or 3 under each foot if i don't take Prednisone.

[piglette]

Have you tried rubbing steroid cream on the blisters? That might be better than taking tablets from a side effect point of view. Bullous pemphigold can just go away, so you may be lucky.

[Ishmail in reply to piglette]

Yes i have tried steroid cream. The blisters get dry but other blisters will start. They stop when i am on Prednisone 7.5 mg next month i start 5 mg

[piglette in reply to Ishmail]

How really annoying as that would be so much better than tablets. With any luck it will go into remission.

[HeronNS in reply to Ishmail]

Just checking in with a comment on your specific question. The others have given lots of good advice, but I'd like to say that finding the perfect dose which manages your condition and staying on that dose will probably be a lot easier on your system than having these spikes and relapses, etc. In that sense in order to find the right dosage you may have to adopt a slower taper just like we do here. In other words, see if your doctor will help you to taper by half a mg at a time, with about a month at each step. As it seems likely you'll be on this medication long term, "It isn't slow if it works". Good Luck - and do let us know how you get on!

🍀

[Ishmail in reply to HeronNS]

In the first few months I was tapering 5 mg a month. When I got down to 10 mg I started tapering 2.5 mg a month. When I got down to 5 mg I started getting blisters. I am now taking 7.5 mg daily I feel good and I have no blisters.

[HeronNS in reply to Ishmail]

You *might* find that if you can taper in 1/2 or 1 mg steps you can manage on less than 7.5 but still need more than 5. At this low level any taper is a proportionately larger step than it was when you were at a much larger dose and able to taper in bigger steps. A rule of thumb is not to taper by more than 10% of the dose at any one time. Of course under 10 mg this is nearly impossible which is why we patients on long term pred have developed a few very slow taper plans to help us find the lowest possible dose which works for us. You'll find them here:

healthunlocked.com/pmrgcauk...

[Ishmail in reply to HeronNS]

Thanks for the info.

[scrambledegg]

Have a look at the symptoms of Pustular Psoriasis and see if it seems likely. Psoriasis is an autoimmune disorder. I have it and I have has little blisters on my feet (including the soles) before. They are filled with a milky fluid.

[Ishmail in reply to scrambledegg]

Thanks i will look into it.