Pain again

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