I’ve had PM since March 2016 but finally diagnosed September 2016 and prescribed 20 mg Pred, quickly reduced to 15 mg and then 10 mg. Slow reduction after that, kind of tricky reducing after 7 mg but I’ve finally reduced to 3 mg. this year. At 4 mg I felt great and reduced to 3 mg. very slowly. I’ve been fluctuating between 4 mg and 2.75 mg since June 2019. The pain was mostly in my fingers and knuckles and as soon as my hip started to hurt I would increase the dosage. Recently, I felt great on 3 mg for a few weeks but as soon as I reduced to 2.75 my hands started to hurt. Otherwise, I feel great, no pain anywhere else and I’m back to walking 2-3 miles a day and (very) low impact aerobics. Here’s the issue and I don’t know what to do. My doctor knows about the painful fingers and knuckles (no swelling) and even though my blood work came back normal, including RA negative, he again recommends Methotraxate. I don’t want to start another medication and I’ve refused it in the past. I will be seeing him in September and I’d like to figure out how to reduce the pain in my hands before that. What do to you recommend? Thank you for your help.
how to reduce pain in fingers without Methotraxate? - PMRGCAuk
how to reduce pain in fingers without Methotraxate?
It does depend on why you have pain in your hands - if it is osteoarthritis then methotrexate won't make any difference and personally at your pred dose I wouldn't take methotrexate unless your doctor can show it is likely to be RA. The hip could be bursitis and the hands tenosynovitis which are both part of PMR but methotrexate is unlikely to help there either. Is this your rheumy?
Does this pain improve with ordinary painkillers like paracetamol/Tylenol or cocodamol? Does heat or cold help? One friend with OA in her hands finds a waxbath for hand helps a lot - she tried it at the physiotherapist and they advised on the best device for her needs.
Thank you PMRpro, I agree with you. A couple of years ago they x-rayed my wrists/fingers and didn't find osteoarthritis. I will have my rheumy x-ray them again because without x-rays he thought it might be osteoarthritis or seronegative RA, hence the Methotraxate recommendation . I really need more proof that it's RA and he can't give it to me. I divide my Pred dose between AM and PM and with the PM dose I also take 100 to 400 mg Ibuprofen. I found that it helps with the morning stiffness in my hands when reducing Pred but the last few days it hasn't helped the pain in my hands. I was hoping to reduce Ibuprofen too. Tylenol didn't help. Heat helps somewhat but not ice. Yes, this is my most recent rheumy who actually listens. I go to a teaching hospital so every 2-3 years I get a new student. I like them because they ask lots of questions because they are so new. What I noticed through the years that they all have the same recommendations, always by the same book and they don't deviate, as if we are all built the same.
I know, I know - stuck in dinosaur land some of them. And of course, if they have the same teachers ,,,
Prof Dasgupta told us a couple of years ago that he often keeps patients at 2-3mg long term to reduce the risk of relapses. I would far rather a bit more pred than adding MTX - at a bit more pred do you need the ibuprofen?
I wish I stayed at 4 mg. but felt well enough to reduce and haven't been able to get back to feeling as well as before. Not with my hands anyway, all else feels great. Yes, I need the Ibuprofen, it's the only medication that has reduced my morning hands stiffness as I reduce the Pred. Weird but it works. I try not to take it any other time. I noticed that as I reduce the Pred I have to increase the Ibuprofen dosage to not wake up with stiff hands. Right now, the hands are the only issue.
What dose of pred would mean no ibuprofen needed?
I keep a chart so at 3.75 mg I started with 50 mg Ibuprofen, at 3.5 mg Pred I went up to 100 mg Ibuprofen and at 3 mg Pred 150-200 mg Ibuprofen. So I'd say 4 mg Pred is the time I don't need Ibuprofen. I can only Reduce Pred by .25 mg.
If it were me I'd insist on staying at 4mg and dropping the ibuprofen. I really would - and I know a few rheumies who would agree, One extra mg of pred to eliminate 2 other drugs and really, a third, as pred plus ibuprofen should mean a PPI too.
Thank you so much! That sounds good to me. I will do that. How long do you think I should stay on 4 mg Pred?
Don't know - until you can reduce without the hand pain??? I have to emphasise that is only what I would do, and a doctor would have to come up with a good justification for me to be willing to try something else. I have tried methotrexate and it was an awful month.
My rheumy here has started me on tocilizumab, my pred dose was creeping up, almost 20mg. He HOPES I will get to 5mg - that's what he's aiming for, But that is all. That is after 13 years and much of it at above 10mg. But I haven't needed any other pain relief until recently - and it doesn't really work!!!
I hadn't realised you'd started on tocilizumab Pro! We'll all be really interested to hear how you go after your very long journey with PMR. I have heard some people do brilliantly on tocilizumab let's hope it works its miracles for you!
What does your doctor think the Methotrexate will do to help you? Reduce the pain in your hands?
LOL, it sounds silly doesn't it? They keep saying it "could" be seronegative RA. I really need proof to get on more medications. The doctors want me off of Pred with Methotrexate. It's been recommended to me numerous times and I've refused.
Surely you should stay on pred until the PMR says you can stop pred not when the doctor decides on it. Out of interest does the Ibuprofen help the pain in your hands at a lower dose?
Yes, it has helped. I find as I reduce Pred I had to increase the Ibuprofen. Such as at 3.75 mg I started with 50 mg Ibuprofen, at 3.5 mg Pred I went up to 100 mg Ibuprofen and at 3 mg Pred 150-200 mg Ibuprofen. I read somewhere a study, which I can't find now, that you can take NSAIDs as you reduce the Pred but of course Ibuprofen has it's own scary side effects.
If the Ibuprofen is working it sounds like you have something other than/as well as PMR.
I agree, they do say that. Ibuprofen never helped me during the most painful period of PMR, only during tapering, at lower Pred doses like 3.75 mg. This is one of the paragraphs "Nonsteroidal anti-inflammatory drugs (NSAIDs) may be helpful as adjuncts to corticosteroids during tapering, or alone in mild cases; however, because they are associated with increased drug-related morbidity, they should be used with caution, especially in elderly patients." Here's the link: emedicine.medscape.com/arti...
Do you actually have RA symptoms, which include tenderness, redness and swelling of joints?
I've often wondered why mtx seems to help some PMR people and have no beneficial effect on others, and speculated that maybe those who were helped have undiagnosed seronegative RA.
No, none of these symptoms, nor does it come up in the blood work but, from the beginning (2016) the doc said it was RA. That's why I left my first doctor. He wanted me on Methotrexate right away and my gut feeling said it wasn't RA.
I have pain in my hands, but it is definitely osteoarthritis (enlarged joints and slightly misshapen fingers, it's taken over 30 years to get to this state since original diagnosis). I've recently been given physiotherapist's advice about ways to strengthen my fingers and, oddly enough, this has been helping. Also now make sure a little Flexiseq from my nightly application to my knees gets on the finger joints.
I am a real believer in exercises given by physios! 18 months or ago I could hardly walk and went to a physio in despair. She gave me exercises to strengthen the sacro iliac and hip joints. I do them religiously. I can now walk up flights of stairs like a normal person instead of having to drag one leg after the other.....
Physio has been part of avoiding knee surgery. It's helped me with various problems over many years. I must by now have exercises for nearly every body part! And it is so empowering. You go, you get your exercises, you do them (and they are usually really dull so it takes self discipline) and you get better!
I totally agree Heron. It's the boring part that hinders the doing of them but, if you persevere, the improvement becomes the motivation!
I agree, I've gone to physio 3 times since 2016 when I was first diagnosed and the ladies there are amazing. I was so stiff that I couldn't have gotten better without their advice.
Nsaids interfere with cartilage regeneration so can actually contribute to arthritic changes and make worse the very condition (pain) for which they are prescribed.
I know, I wish I didn't feel better taking it but I will follow PMRpro's advice and stay at 4 mg Pred and see where I go from there.
Haven't there been suggestions that steroids can damage cartilage too?
Yes, but I can limit my nsaids to the occasional headache, don't need it every day, I can't limit my pred.
My joints seem to click more the longer I stay on pred. (My physio is unconcerned.) I am not touching NSAIDS these days.
Yes, I'm glad as I've got older I don't get headaches as often, but my father had regular headaches and I appear to have inherited the tendency. Nowadays they seem to be related to unsettled weather, but I think I may react to some foods too. Not many tension headaches in my life these days. 
I have fewer headaches now I am not at work. I used to get them on Saturday morning and if I ever stayed in bed even slightly longer than usual.
My father always had a Thursday headache. He was a doctor, and Thursday afternoon was always his time off and usually he'd drive to a nearby city to get away from patients, taking me with him during school holidays. We used to see a lot of movies together. And he always had to take headache tablets.
Sounds familar. The current thundery is giving me slight headaches and also, I think, joint pain.
Hugs. Will a cup of tea help?
I was diagnosed with PMR in May 2014, 8 years ago, and like you when I get down to 3/3.5mg Pred my pains return, always starting in my fingers when I cannot clench my fist. For me, this is the first sign of a flare, when I up my Pred slightly. My consultant also suggested Methotrexate which I declined, having tried it in the past without success. I am now resigned to Dr Dasgupta's advice to stay on a low dosage, gradually trying to come off Pred altogether (fingers crossed!) My Rheumy suggests a reduction of 0.5mg every two months. However, a friend and like me former PMR/GCA NE Branch member recommended an article "Osteopath reveals the warning signs your lymphatic system is blocked - and simple movements to get it back on track" - mol.im/a/10373425. These daily exercises have drastically reduced my painful fingers and upper arms. I cannot manage the kneeling exercise so do this one while standing. Hope it helps you too.
Katietee, thank you for sharing your story. I'm just like you, my knees are much better but not back to normal and making a fist is painful. The exercises look easy and it certainly won't hurt. I'm going to try them. Thank you so much! I wish your PMR journey to end soon .
Do you enjoy an alcoholic drink? If so I would avoid going on MTX as you are told ideally no alcohol or at best, very limited. Also, I was told not even to take any Multivitamins and it put me in the 'Vulnerable' category for Covid - not such a bad thing to get jabs early, but it still makes me avoid crowds, large events and my choir, which I used to love. I am still not convinced as to what it is doing - I am now at 2.5mg Steroids and slowly tapering to 2.25mg as the (more than 10%) drop to 2mg left me in too much pain and discomfort. I wish I wasn't taking MTX. I would refuse it if I could go back in time.
I had been suffering with painful hands mainly my right hand i was waking in the morning and not able to move my fingers or make a fist, couldnt grip things or carry anything. I have an appointment this month to see the rhuemy, last visit last Oct when he put me on a maintain dose of 5mg Pred, so will ask him, but the strange thing is i have been using a rub to massage in my painful knees and my hand has improved, no more stiffness in the morning!! It is a gel with Magnesium and Glucosamine from a well known supplement company! My knees are also a little better!! Been using it in the mornings for a couple of months! I tried Flexisec but find this better!
That is very interesting! I believe that something topical to relieve the pain is better than an overall medication that can cause other problems. Thank you for sharing.
I have the same problem in my index finger. Painful. I am on 7.5mgs, (diagnosed Apr'20). I don't take painkillers to spare my stomach. Xray showed no problems, so they ruled out Osteoarthritis. I (normally) play guitar a lot, and this has cut that out. What I did successfully do (which eliminated it for 3 months), was injections of 2 x steroids (short & long acting) into the fingers, like a bursitis treatment. The pain is now 80% better there. Also, I have had issues with my hamstring, and the top of my foot. I put these pains down to tapering, however gradually, and comfort myself by saying that one day the illness will depart and so will the pain, but it's better to keep on the lowest Pred dose that eliminates almost all symptoms, partly because I had an unfavourable bone-density dexa. Good luck - I am certain things will improve.
Thank you for sharing your experience. When I was at 3.5 mg Pred two years ago, my left foot started to hurt. The doctor increased the dose to 5 mg but it didn't help. Instead, the pain got really bad and the foot was badly swollen. What helped was the Cortisone shot and then I was able to reduce the Pred slowly. What bothers me is that this doctor didn't order any X-rays so how can he tell I have osteoarthritis. So far I've increased the Pred dose to 4.50 mg and it really reduced the pain and I'm also using Flexiseq. The pain is not completely gone but it's manageable.
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