reducing pred by pill splitting or 1 day a week

[piggylovesgolf]

Hi everybody----back again.

Hubby has just about recovered from the presumed side effects of MTX and just had call from rheumy nurse who was offering the MTX by injection. After discussion nurse said fine if he wanted to try reducing pred himself and she would call again in 4 weeks to see how things are going. Seemingly he wont be "struck off the books" and he can go back to them anytime and they will start the MTX.

My question is ---is it better to reduce pred (currently 3mg and has been for about 6 months--no symptons currently and blood results and synacthen test all good) by splitting the pill and taking 2.5 a day or the 2 mg one day and 3 mg for the next 6 and so on. If one method is better than the other could anyone just explain why.

Hubby does not want the return of the chronic diarrhea ---believe me it was horrendous. Nurse did say she couldn't guarantee the diarrhea wouldn't return with the MTX in pen form but she didnt seem certain that MTX was the cause. Our GP thought it probably was and the doctor in the hospital who blamed it on that was a doc in A and E and the nurse was slightly dismissive of this as he wasnt a rheumy doc.

Sorry for long rant---brevity is not my long suit.

Thanks in advance.

[PMRpro Ambassador]

So the problem started after MTX was started and has improved now it has been stopped? That would be enough for me to associate it with the MTX - and how unprofessional of the nurse to decry a doctor's opinion just because he isn't a rheumy!!!

There is a lot about the approaches to tapering in the FAQs - and remember he can only cut the tablets if the are plain pred, not enteric coated. And it is a big step to just go from every day 3mg to every day 2.5mg - a basic rule is to keep the step down as close to 10% as possible which is why the tapering approaches were developed.

[piggylovesgolf in reply to PMRpro]

Many thanks----I will study that. He can always go back to the rheumy if he wants to try the MTX again but hes really just had enough. Now broken out in a rash on lower legs but may be nothing to do with PMR, pred or MTX. It just seems to be one dam thing after another!!!!!Must say though that the rheumy's do seem to have been on the ball---they have always phoned when promised but would really have preferred to see the consultant again rather than just hearing from the nurse but thats perhaps just me!!

[PMRpro Ambassador in reply to piggylovesgolf]

If he is fine at 3mg - Prof Dasgupta would have probably left him there! Is he allergic to anything? Several have found allergies wake up at lower doses of pred.

[piggylovesgolf in reply to PMRpro]

No. Allergies seem to be one thing he doesnt have!!!!! He has been on 3 mg for ages now so probably not that that's caused the rash. Despite everything, hes pretty healthy in an odd sort of way. heart is apparently very good and strong and blood seems to be fine. Hes basically a very active chappie but this lot and the lousy winter has really got him down. His main symptom is the lack of strength which has caused him to give up the things he enjoyed doing. Ah well----we keep plodding on and hoping for the best👍

[Karenjaninaz in reply to piggylovesgolf]

Lack of strength is a real issue. I lost so much muscle strength that I’m on oxygen 24 seven. My breathing muscles are weak. I am on 12 mg right now. I was all the way down to 4.5mg when, after the flu shot, I had a setback with asthma. With hospitalization they gave me 40 mg of prednisone. So I started all over again to taper. I made it my business to make myself move and exercise. I found, even at this level, I feel better and it’s working. A nap is mandatory in my case. The problem is to start exercising and start moving i- t’s like moving the Rock of Gibraltar. I found some YouTube videos, from good medical centers, giving exercises for the very weak. I started to do those. Then I mini sessions of exercises throughout the day especially for breathing and leg strength. It does make one feel much better.

[piggylovesgolf in reply to Karenjaninaz]

oh dear that sounds pretty dreadful---oxygen 24/7. Dont' think hub is that bad but yes--agree exercise seems to be the thing and try to build up. Hope you start to "mend" soon. We both started pilates abd its done me a world of good and my golfing muscles are improving by the minute but hubby packed it in as we missed a lot of lessons (we went privately for 1 on 1 sessions) and felt she was losing money through us so he packed in but I went to a class. Perhaps pilates is something you could think about. Good wishes

[DorsetLady PMRGCAuk volunteer]

As PMRpro says look at tapering plans in FAQs .. and go for the 3mg to 2,5mg.

Personal opinion only- but I think the alternate days is too hard on the body - and when we are talking about 3mg and 2mg it might not sound much -but it’s a big difference in percentage terms - and there’s very little leeway in such low doses anyway.

[piggylovesgolf in reply to DorsetLady]

many thanks DL---will study it now---always have trouble finding the FAQ's

[PMRpro Ambassador in reply to piggylovesgolf]

There is a link in a box under the top post of every thread - unless you have hidden it!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

It does sometimes disappear of it’s own volition - honest guv!

[PMRpro Ambassador in reply to DorsetLady]

I'll believe you!!!!

[DorsetLady PMRGCAuk volunteer in reply to piggylovesgolf]

Depending on device you are using - they are under Pinned Post - so either right of screen or scroll down to below current posts. There is also usually a banner under the first post on the ‘posts page’, but not on news feed page.

If you promise to read them and save what you need, and as I’m feeling kind, 😊here’s a link -

healthunlocked.com/pmrgcauk...

[piggylovesgolf in reply to DorsetLady]

I promise!!!!!😍😍😍😍 Found it---316 topics on tapering. That'll keep me going for a while😀😀😀

[piggylovesgolf in reply to piggylovesgolf]

Its a chromebook---- not always quite the same as ipads or windows

[PMRpro Ambassador in reply to piggylovesgolf]

Mine didn't vary between the Chromebook and this laptop which runs on Windows.

[MrsNails]

You can also get 2.5mg tablets that split easily making a 1.25mg dose so that can be helpful as well.

[SheffieldJane]

You cannot be “ struck off the books” when you are on Methotrexate. It’s a serious drug that needs close supervision and regular blood tests. I hope he’s better on the injections. My suspicious mind tends to think that all the injection option does is deal with non compliance - but maybe I have trust issues. Surely he barely needs it now?It’s good that he has no symptoms and the Synacthen Test was encouraging. If I were he, I would really take my time tapering. Invest in a pill cutter and use the dead slow nearly stop method - have a look at FAQs where you will find DL’s tapering method that gets a good press.

[piggylovesgolf in reply to SheffieldJane]

Thanks SJ. He does have a pill cutter and I will study the tapering when I find them on the FAQ's and try that. He can always go on to the MTX if he has a bad time cutting down any further

[Sharitone]

I would want to ask the question 'What do you think going back on MTX would achieve?' I stopped mine 4 weeks ago because of a pharmacy mix-up, and was going to ask the rheumy that very question when I saw him this week. But he said I needn't go back, and I feel like throwing a party!

[piggylovesgolf in reply to Sharitone]

😂😂😂😂 your final comment. Actually I tried to ask that question (phone appointment and on speakerphone so i could chirp in) but didnt really get a definite answer. Rheumy nurse said well it helps get you off steroids". This wasnt much of an answer really so I followed up with "well whats the difference between that and just reducing the steroids." I dont think she really knew as she simply said ( very nicely I must add) that it was up to him if he didnt want to take it and he could try reducing and seeing if that worked. My understanding, and mostly that comes from this forum, is that you take MTX and then when that kicks in ( and the diarrhea has stopped 😀😀) you can then start to reduce the steroids and then---per the nurse and I think Ive got this bit right, you eventually get off the steroids but are still on the MTX, in which case there doesnt seem much point although I assume and was given to understand that MTX alone is better than pred alone. But yes, I do think this is the question and we havent really got a very definite answer. Thanks for your response.

[Sharitone in reply to piggylovesgolf]

If your chap takes it, I really hope it works for him, but for me it did nuffink!

[Doraflora]

If it was me I would just gradually introduce 2.5mg say once a week to start with, then the following week after six days and so on. Slowly slowly is key.

I’m certainly no expert (there’s plenty of those on here, thank goodness), but as already been suggested, there will be a more detailed tapering plan somewhere on here.

Good luck to your hubby.

[piggylovesgolf in reply to Doraflora]

Thank you for your response. He's just cut this mornings dose down to 2.5 so will keep close eye on symptoms. He tends to try and ignore any aches, pains, twitches and soldier on but i give him a barage of questions each day.

[Magster54]

Hiya, I'm a bit late to the party here, as I've not read any of your previous posts, so don't know how long your Hubby was in MTX, but I just wanted to make a couple of comments. My rheumy prescribed oral MTX as I was struggling to reduce my Pred from 6mg, and he wanted me to get below 5mg, where it causes less damage to the body. I managed to take MTXfor four months, then stopped as it made me feel dreadful and my PMR symptoms did not improve. I managed to reduce pred to 4.5mg, using DSNS method. At my next rheumy appt, we were both delighted to see that my ESR and CRP levels were back down to normal l for the first time in 3 years. Rheumy is convinced the MTX is reason for this and said that some people need only take it for a short while to see vast improvement.

As I continue to gradually reduce my dose, I too, have the return of a horrible looking rash on my lower calf that appeared before I started Pred, (I put it down to heat rash) it cleared up at higher dosage but is now back with a vegeance at 3mg

[piggylovesgolf]

Thank you Magster. Hubby was only on MTX for 2 weeks. He had just taken 3rd dose (an increase from 4 tablets to 6) when all hell broke loose. Report to doc from rheumy before start of MTX was that inflammation levels in blood were "normal". Not sure of any numbers re ESR & CRP. He doesn't appear to have real symptoms of PMR and hasnt had for a while ---general aches and pains associated with arthritis but just this loss of muscle and strength now and general not feeling well symptoms. Of course it may well be that the pred is taking care of the symptoms but I have wondered if he is actually better as his test results seem to be good and not really any major symptoms any more--but hes not one to complain anyway. Doc and rheumy wanted to put him on alternative to pred as they both felt he had been on it for a long time. I think, if i remember correctly, at one point during the consultation rheumy said something about the length of time he had been on pred ( nearly 4 years altogether although got to zero and then restarted)made him think it might not be PMR (Ive only just remembered that). He did a barage of tests though which he did say would be looking for cancer and also arterits---think he said temporal which I took to be GCA. Happily the results were clear (had MRI scan and CT scan also) Not sure what this rash is but he has cut pred down from 3mg to 2.5 and nothing has happened so far although this is only the 3rd day on 2.5.Thank you for your info and response and all good wishes to you.

[PMRpro Ambassador in reply to piggylovesgolf]

Oh for goodness sake - PMR has a median duration of 6 years according to one study - that means only half of patients are off pred in that time.

[Magster54 in reply to piggylovesgolf]

Your Hubby's current symptoms are much like mine. I wish him well, and good luck with his tapering.

[piggylovesgolf]

I do find it odd though that almost all the medical people seem to think it is best to get off pred if you can. But then perhaps they all went to the same school😁😁😁 I do worry though that it was me who more or less talked him into refusing the injecting method of MTX though. I have no medical training and I hope I have not made him worse in the long term.He is currently reasonably well, apart from the leg rash

[piggylovesgolf]

Incidentally there is a male nurse at our golf club who hubby knows and he told him that although "they" say you take pred for about 18 months to 2 years most people take it for nearly 6