trying to reduce dosage
Posted , 5 users are following.
I was diagnosed, finally, with PMR the end of August after 6 weeks of horrible pain in shoulders where I couldn't even turn over in bed, get out of bed or get dressed or drive without screaming. I didn't get any relief until they got me up to 20mg and even then the pain was only tolerable. That was Oct 25. By December the Rheumatologist wanted me to start reducing to 17.5 mg. The first day I did that I was a mess. Couldn't move off the chair, the fatigue was so bad I could hardly lift my head. Called Dr, went back to 20mg for 2 weeks then alternating daily 17.5 and 20 mg. Now I am taking 17.5 daily and exhausted. Next she wants me to alternate 15 mg and 17.5 mg. My question is what is happening to me that I am having such terrible reactions to lowering aat these dosages? I just turned 70 and have always been active, strong and independent. Now, I can hardly move from bed to chair. Doing laundry is a major expenditure in energy. Going to the grocery store wipes me out for the whole next day. My ESR is normal now. Is that because I'm taking the prednisone, or has PMR abated? Are these extreme fatigue and weakness symptoms due to the underlying disease or the prednisone side effects? I really need some validation as I feel like the worst, laziest person on earth.
0 likes, 17 replies
EileenH bonnielee
Posted
You certainly aren't the worst laziest person on earth!
You are suffering from steroid withdrawal rheumatism - although theoretically 2.5mg reductions are OK, in practice they don't work for a lot of people. And she is adding to it by encouraging you to alternate doses in that way - some people simply can't take the chopping and changing from day to day. And practically speaking - she is rushing you. I know the guidelines say it can be done - they didn't ask the patients!
Have you found the PMRGCA forum? Come over there and there are plenty of people to encourage you!
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
There you will find this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
with a lot of info links - and in the replies is a slow reduction scheme that has been used by many patients very successfully to avoid the discomforts and exhaustion you are experiencing. A lot of rheumies have been persuaded to try it and most admit it does help their patients. There are even quite a few making use of it.
phillip11645 bonnielee
Posted
Your symptoms seem typical and they are most likely compounded with a degree of accompanying depression. Sounds like your doctor is reducing too soon, and are you also on Methotrexate which is supposed to ween you off of Prednisone?
I initially had severe pain & stiffness in upper thighs which then enveloped whole hips and then went to shoulders & hands so I could barely get out of a chair - just 2 weeks prior I had been out with a chainsaw and an ax! Also had severe lower back pain and got a lumbar steroid shot which eliminated lower torso problems.
About 8 months ago, Rheumy started me on 15 mg of Prednisone which pretty much eliminated the symptoms in 3 weeks except first thing in the morning. I began to reduce by 2.5 mg in 3 week increments, but when I got to 5 it flared up and had to go back to 10. It was probably too rapid of a reduction even tho it seemed to be OK at the time. Tried to go down in longer increments but still stuck at 10 mg.
Started on Methotrexate about 4 months ago @ 6 pills (15mg) in single dose once a week along with Folic Acid daily. Got down to 5 mg Prednisone, but flared up again and still stuck on 10 mg Prednisone daily even with Meth.
Doctor recently suggested taking 7 pills of Meth in one dose along with daily Prednisone and Folic Acid, but I just started taking one pill of the Meth (2.5 mg) daily instead of single "blast" to see if spreading out Meth will make any
improvement.
EileenH phillip11645
Posted
I hope you discussed using methotrexate daily with your doctor? Daily low dose use is associated with far more side effects, particularly liver problems if I remember rightly, when used daily instead of once weekly.
Your doctor may have given you the impression that methotrexate will wean you off pred - it doesn't. It MAY allow you to get the same effect from a smaller dose of pred because it changes the way the body metabolises pred but it will never replace pred if what you have is "just" PMR. If it did, they would use it and not pred. They don't.
It is quite common for people to find that mtx allows them inititally to reduce well - but eventually they flare. It works for some - it sounds as if either you are one of the ones it doesn't help or you tried to reduce the pred dose too rapidly, before the effect of the mtx had built up. Reducing 2.5mg at a time from 15mg is fraught with difficulty and certainly is unlikely to work below 10mg. No reduction should be more than about 10% of your current dose - at 10mg that is 1, and by 5mg is only 1/2mg.
There may be people that sort of approach works for - but there haven't been many on the forums in the last 8 years!
phillip11645 EileenH
Posted
Thanks much E.,
I aked Dr why not try Meth daily since the blast dose was inneffective and she just said could not recommend that because it is not the "guideline" but did not say daily low dose may have more side effects.
Logically, (but this is medicine) it seems that taking 6 pills of Meth at once (which is supposedly derived from kemo-therapy) would be more of a shock to the system, and none for the next six days would actually lessen its effectiveness for the balance of the week, and actually have more of a detrimental impact on the liver...but you say, not so?
Is there a rationale/proof why this would happen? I'm a newbie on this blog - any blog references?
Has it been "forumed" then, that it's best to forget Meth and stick to minimal reduction such as the plan to reduce one day [by 1 mg] and go back to 6 days original dose; 2 days reduced dose and back to 5 days original dose, etc., that I saw mentioned?
EileenH phillip11645
Posted
Personally before trying methotrexate I would always suggest a really slow reduction approach:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
This is our "reading list" for newbies. But in the replies part of it is a very slow reduciton pattern that has worked for many people to get lower than they have ever got previousl with other reduction plans, most of which are totally unrealistic.
You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages YOUR symptoms. You are you and your PMR bears no relationship to anyone else's - and even less to the expectations of most doctors!
This paper:
Weekly vs. daily administration of oral methotrexate (MTX) for generalized plaque psoriasis: a randomized controlled clinical trial.Radmanesh M
concluded
"Nausea, vomiting, headache, and fatigue were significantly less common side effects in our patients who received MTX daily, but liver enzyme abnormalities were less common, and clinical efficacy was greater in the patients who received MTX weekly."
If anything, 2x weekly would be best. The point is that the half life of methotrexate can mean that in some patients the level rises when it is taken more often. And that can be toxic.
phillip11645 EileenH
Posted
You said "before trying pred........" Did you mean before trying MTX?
And I see that the study was re psoriasis, but gather that the side effects would be across the board.
EileenH phillip11645
Posted
sheila65847 EileenH
Posted
Dear Eileen,
thank you for the allegory, sums it up so well. Also your a insight, I do have long term depression which is common with chronic disease and pain, I think I need my AD's tweaked or CBT again.
also you identity exactly what has gone awry with my usually good eating habits - I CRAVE sugar, I can eat a family size cream cake and start a 2nd one; I'm not hungry but it's a completely overwhelming urge to eat sugar. I noticed this 2 months ago when I consumed 10 Weetabix with sugar and milk at 3 am. All my life I have weighed a steady 8st, now 10stone. Another time I ate 500g of dessicated coconut topped with a 400g sweetened condensed milk, again in the early hours - what's going on? .
I've always been a 'savoury ' eater; I've flipped the other way. You can imagine how disgusting I look and feel but I never understood what craving actually feels like, oh I hate myself at present. I must get a grip somehow
EileenH sheila65847
Posted
Those sound like pica - the cravings you get in pregnancy
sheila65847 bonnielee
Posted
Hi all
Glad to have found this thread, I'm desperate to reduce daily dose 15mg because of ridiculous weight gain. I have psoriasis arthritis and so far none of the usual medication has put my disease into remission. I've tried 3 disease modifying anti rheumatic drugs including methotrexate which led to methotrexate induced hepatitis, not fun I can assure you. Then I tried 4 anti TNF biological remedies, again without success so I'm stuck on oral presentation plus regular aspiration of joints and corticosteroids plus IV methylpredisolone which appears to be required every 4-6 weeks. I feel great for 2 weeks following the IV but I'm so frightened of long term effects. My life has shrunk to nothing, I'm unable to make plans, well I still make them, buy tickets, make reservations and then due to pain or fatigue I pull out. I'm 52, I lost my job & yes I get a pension. But I've lost myself, no energy where I was life and soul. It's got so bad I'm frightened to try new things as I can't cope with feeling a complete failure. I'm contemplating ended my 22 year relationship as why should I drag the poor chap down with me. I've sobbed all the way through this - who should I ask for help - rheumatology? GP? Of course I am experiencing menopause symptoms too? Or am I ? I'm so awfully mixed up. I cry an awful lot, please,please help . I'm 2 stone overweight, which is new and horrible, makes me lethargic or is it fatigue due to PsA? .. Many thanks in advance. Wishing you all peace and happiness, sheila
EileenH sheila65847
Posted
The option we on another forum, all of us also on steroids long term, recommend over and over for the weight gain with pred problem is LOW CARB. It may means starting with almost NO carb - but many of us have lost weight on pred (I lost 36lbs, all the pred-associated weight gain plus a bit) and others have avoided weight gain.
Others have lost weight using the Slimming World approach and my granddaughter has lost pred weight by becoming vegan.
It can be done - but it is up to you to find what suits you and stick to it. The low carb approach also helps reduces the risk of pred related prediabetes and the cravings for carbs so many people experience when on pred. You have far fewer swings of blood sugar levels which induce insulin spikes followed by low blood sugar and insulin is waht makes your body deposit the fat in the usual places.
The fatigue you have to learn to manage by pacing:
https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000
and also google the spoons theory by Christina Miseriando for an allegory to apply to life with chronic illness.
And maybe ask for help from one of your doctors - because you are clinically depressed as well as having a chronic illness. It is understandable but with help you will get through it.
sheila65847 EileenH
Posted
Hi Eileen
Thanks so much for a quick reply, am going to read it slowly, after wiping away my tears. Truly thanks for getting in touch so quickly, I'm very low. Best wishes
sheila65847 EileenH
Posted
Also, it's going to be almost zero carbon for me. Back to porridge everyday to reduce my high cholesterol, best thing ever. Drinking lots of water and veg, veg, veg with lean protein. Thank you for your insight. Up until PsA started, I was extremely fit and slim, a UK size 8 all my life, 2 years of oral steroids, plus injections and infusions plus limited mobility (was wheelchair bound for a time ) I cannot bear to look at myself in the mirror without total disgust. I know I can stop the steroids, no one forces me but then the pain is unbelievable plus limited mobility. Catch 22. Don't know what to do for the best. Big Sigh! Please, anyone who has experienced this HELP!
EileenH sheila65847
Posted
Pred doesn't HAVE to cause unlimited weight gain - but you do have to manage those cravings in some way. As I say, not having the food in the house helps!
I put on weight because of immobility with my autoimmune illness and still eating - when I eventually started on pred I didn't gain more but the fat moved to the usual pred places. I was switched to a different form of steroid when I moved to live here and gained weight big time. I was put on yet another sort and adopted low carb - and lost it all and a bit more, 36lbs. And the first fat to go was that round my middle. It CAN be done - you just have to find your way. You may need some help - and I wouldn't be surprised if some of the problem is your longterm depression as well. Do seek some help - it is out there
sheila65847 bonnielee
Posted
Spell errors:
psoriasis arthritis s/b psoriatic arthritis
Oral presentation s/b oral prednisolone
Other daft things you will work out, I'm sure
Advice welcome please, do I knock repeatedly on my GP door? Do I make the decision to stop prednisolone? And become wheelchair bound. I don't know, I'm so scrambled after the cocktail of drugs?
EileenH sheila65847
Posted
I think you perhaps need another rheumatologist - because there is always the possibility that what you have ISN'T psoriatric arthritis but you have psoriasis AND something else. In which case, a new view might help.
I'm not entirely clear though why you want to stop pred? Is that being demanded? Does it give you any improved quality of life? And as for being wheelchair-bound - is that inevitable? But even if it is, it isn't the end of the world: google a blog called the Seated View by Lene Andersen. Who probably is about as inspiring a person with arthritis in a wheelchair you will find.
sheila65847 EileenH
Posted
Hi Eileen,
most definitely psoriatic arthritis, I paid for a 2nd opinion at a rheumatology hospital in the south. Since I last posted I have seen my rheumatologist for corticosteroids into knees but I'm getting less than 4 weeks reprieve. Since December I've been seeing him on a fortnightly basis, currently there is no other biological treatment for me; NICE are in negotiations with Novartis over a new one which i will be prescribed but as yet it's not licensed.
today is bad as I cannot move around without extreme pain and difficulty. I must accept that pred is necessary at the moment but it's temporary. I'm going to look at alternatives to steroid and painkillers but it's very difficult to motivate myself when I can't move without dreadful pain. Thanks for your help, understanding why the craving occurs is part way to addressing the problem