Hi I started PMR May 2013 took 20 mg to steroids to start with until Sept 2014. Was only off them till January 2015, then put on them again but this time 10mg. I am reducing to 5 then 7 alernatate days now but the pain in my neck is so bad again. Can't sleep at night as can't move my neck, think I will have to up again to 20 mg but I have put on so much weight especially in my face. Help please.
Hello Jo, it's hardly surprising that you are still in pain when your reduction appears to be most unconventional on birth instances.
first time round, to be off preds from 20mgs yo zero in about 16 months most be a world record. I fear that first time round you reduced too quickly and the reason why you are back on the preds again is because the auto immune condition was not in total remission hence the new flare. In January you had a flare and are once again reducing far too quickly hence the pain in your neck, the inflamation is not under control.
see the Bristol PMR plan - 15 mgs for 6 weeks, 12.5 mgs for 6 weeks, 10 mgs for up to a year, (I was on 10mgs for six months). Then reduce by .5 every six weeks.
your weight gain is small fry to yoing yoing and flaring on and off, which is exactly what will happen if you do not adopt the slow slow approach.
i would up the preds to 15mgs on reduce in line with the above, remembering the six weeks is not law, if at any level of dosage you are still feeling uncomfortable stay on that dose for a little longer.
it is possible to lose weight even on preds, but it is hard. However, try to stick to a low carb diet and try to do abit of exercise, walking is excellent as it does burn some calories and it also helps counter act the damage preds do to our muscles and bones.
jo, I don't know what recovery plan your GP or your rheumatologist has put in place for you but look at the Bristol paper and follow that until 10mgs then it's the slow, slow approach, that's the gold star treatment for PMR.
i wish you all the best. Christina
Hi Jo I am not really medically trained...but I do think you are reducing your pred to quickly and to big doses ,,,their are lots of people that will be able to advice you musher better Than I can . Just wait a little while and you will have lots of helpful answers x
Hi Jo, As others have already said, SLOW SLOW is the only way when reducing Pred. I was diagnosed around the same time as yourself, also starting at 20mg Pred. am reducing slowly, and am presently at 5mg., and at this point the pace is now slower still - I reckon I'll be reducing for another year yet in tiny doses and am open to the possibility I may NOT get to zero Pred. at all and may have to have a low 'maintenance dose' for a long time.
Sorry, something happened there. Just wanted to add - stick with Christina's advice and, when you've checked out the Bristol plan as she advised, talk honestly with your doc. Keep in touch with us here and good luck.
Hi Jo, I am in agreement with the others and also I am with you about weight especially in the face/neck. I hate it but I know there is nothing I can do about it. I am trying the 5:2 diet and am doing kinna ok. Good luck Jo on your journey and please keep in touch and keep us all up to date. Regards Pat
I would also agree with a MUCH slower rate of reduction. I am also fairly new to this great forumand follow daily for much needed information. I started on 20mg Dec 1 2014 for 4 weeks then reduced to 17.5 for two weeks then to 15 after 1 week, 12.5 after two weeks then to 10 after 2 weeks. After 10 its 1mg every 4 weeks. Looking at my pain diary I was really only comfortable with the pain for about the first month
And the pain really increased under 10 mg. Since my rheumy will not discuss options i am looking for a new one. I feel that this rate of reduction has left me in constant pain. Kneck shoulders wrists bhands hips lower back ankles and tops of feet. I am currently on 8mg and constantly in pain but be cause my crp levels are normal i was diagnosed with fibromyalgia and Lyrica was prescribed. After 3 weeks of same pain i have stopped taking it and will be looking for another doctor. I will stay at 8mg and not reduce further. I truly believe the veiew of the people on this site and know my problem is reducing too fast. I too have a fat face rosy cheeks and look ever so healthy. People wonder what my problem is. Last coment from coworker was well everyone has arthritis.
I try to watch what i eat and swim 4 times a week just paddling but it helps mobility and they have a hot tub. I hear all of the weight goes when the preds are reduced. Being afraid of what will happen and stressed about what the future will was the hardest part for me. Im a financial planner and this of course was not planned. Six months in im calmer and hope you find the help support and answers on this site as i have.
Joanne
Jo, same story here....:"hamster cheeks" -- no fun to have these, and people comment on my round face. I have not gained weight overall --- only my face.
When you up to 20 mg because of the neck pain, reducing slowly would be best.....like 2 1/2 for a week or so. I have reduced faster with 5 mg, which took me right back to a flare.
Good morning,
It is now 7am, and I have been up since just after 5am. I have had PMR since November 2013, and up until now been able to control the pain quite well with steroids, and came down slowly to 5mg last week. That is until this morning when I could hardly get out of my bed as the pain in my shoulders and neck was really bad, Luckily I am seeing my Rheumatologist next week, and hope that he can suggest something to help. I too have put on weight round my middle and my face, and this makes me feel bad.
Kind regards,
Grace
Hi joy i am on 10mg, which is what my doctor put me on in January, this morning is the first time i can feel pain, they want me to reduce but while i feel like this i am keeping on ten.
Thankyou all for your replies it's a great comfort to me to find others in similar positions. I will go back to Drs again this week to discuss my pain & I agree with you all that he is reducing me far to quickly & should go back on a higher dose although I just wanted to get off the steriods. But hay ho I can't continue with this pain. I even had bad earache yesterday & head pain just feel so sorry for myself all the time. Everyone says how well I look, it's the fat checks that do it. Hope everyone has a better day today, although pouring with rain here. X
You need what you need - you might have been OK at 10 but to reduce to 5/7 so quickly is not on for 99% of people.
25% of patients are said to be able to get off pred in under 2 years - they are at a far higher risk of a relapse however and that is what has happened to you. Go back to 10mg until the symptoms are totally under control (if that is enough, is it?). Even if you managed like you say last time the chances are it won't be a repeat story - the few people I know who have had PMR twice say the second lot bore no resemblance to the first.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
In the first post of this thread you will find a link to the Bristol paper a few people have mentioned. In the replies you will find the slow reduction many people on the forums have used/are using. A drop in dose of any size leaves you at risk of a flare in pain - the steps should be as small as possible and for some people even 1/2mg is too much at one go - hence the very slow reduction plan.
If 10mg worked try that first - many doctors suggest adding 5mg to the dose you are on when a flare happens.
None of us like our fat faces (or fat anything elses) but the choice is pain or pred. It IS possible to lose weight on pred - I have lost nearly 40lbs of weight due to pred over 2 years and to start with I was at 15mg. I cut carbs drastically and got things going using the 5:2 diet. It can be done - you have to be very disciplined with what you eat since you can't exercise but you see the results and it makes it worth it.
Morning jo, you must be firm when it comes to your treatment plan for PMR. The Bristol PMR plan wasn't written for nothing, it was written specifically to help drs who know nothing or very little about PMR/GCA and the treatment of these 2 conditions. It is very important that if we are unfortunate enough to have a Dr that doesn't treat us properly, through ignorance or because they don't care, we are proactive in our treatment, otherwise just like you we could end up on this PMR/GCA treadmill for a lot longer than need be.
therefore you read the Bristol PMR plan yourself, and gen yourself up on all available literature that way you know what you treatment you should be getting and what to expect along the recovery journey.
further to your comment about yesterday's ear ache and head pain. Please keep a watch out for these 2 symptoms, although they could be innocent side effects of all the stress and worry to have been under what with this new flare they can also be symptoms of GCA. This condition is linked to PMR. It again is treatable but cannot be cured just like pmr. However, it is a much more serious condition and can in some instances require emergency treatment. Please look up the symptoms and if you are at anytime worried about your symptoms or they get worse get yourself along to hospital Asap.
please keep us informed of your progress. Regards, christina
There is only one thing to help Grace - 5mg is simply not enough to control the inflammation - if you go back quickly to the 6 or 7mg that obviously DID manage the pain it may not get away from you. There are no other options in PMR, other than a rheumy trying unproven additional drugs which have their own downsides and side effects.
The weight on my face and middle has gone with a low carb diet and I am still on pred - but as I said in the other post just now you have a choice in PMR: pain or pred.
you take care
Thankyou Margaret, you too. Have sat and relaxed today to see if I feel any better.
i think i have done too much again, but have had a releax when i got home, lovely to see my sister tho.
Grace, yes, weight around the middle and the face.......here too. And it does make me feel bad. NO FUN! People have been commenting on my r o u n d face.
At least I am not in horrible pain like I was 3 weeks ago. Prednisone does help.......
Right on, Christina !! :-)
Hi Erica, Just remember the weight gain etc. is TEMPORARY. When you reduce your Pred. the side-effects lessen also . . . . So, in a couple of years your Pred. will be greatly reduced (or even stopped) and you'll be back to your gorgeous self again ! My attitude is that I can put up with anything, if I think there's and end to it. . . . . It mostly works.