HELLO: I NEED SOME ADVICE. I WAS DIAGNOSED WITH PMR IN OCT 2017. I STARTED ON 20MG OF PREDNISONE IT WAS A MIRACLE.. I WAS ABLE TO REDUCE TO 10 MG OVER A 10 MONTH PERIOD WITH SOME DISCOMFORT, HOWEVER , I WAS ABLE TO FUNCTION AT 10 MG. I AM 58 AND HAVE OSTEOPOROSIS ( WHICH I HAD PRIOR TO THE PRED AND HAS SINCE GOTTEN WORSE AND HAVE STARTED MONTHLY ACTINEL). I RECENTLY MANAGED TO GET DOWN TO 8 MG WITH A SIGNIFICANT INCREASE IN DISCOMFORT. I AM NOW AT THE SAME POINT IN PAIN AS I WAS WHEN I STARTED. I TRIED 9 MG AND TODAY 10MG BUT STILL AWFUL PAIN. WILL CALL DR, HOWEVER SHE IS GUNG HO ON ME GETTING OFF PRED DUE TO OSTEOPOROSIS, AND ALL THE OTHER PHYSICAL SIDE EFFECTS . SHE RECOMMENDED ACTEMRA, BUT I HAVE HAD A RARE LYMPHOMA 8 YEARS AGO AND AM AFRAID TO PUT MYSELF IN ANY POSITION THAT MY CAUSE ME TO REVISIT THAT AWFUL DIAGNOSIS. ANY RECOMMENDATIONS? SHOULD I KEEP INCREASING THE PRED UNTIL I FIND RELIEF. IT WAS SO HARD TO GET TO THIS POINT. I HATE TO GO BACK UP!
The idea of pred is to find the lowest dose that controls your symptoms otherwise the untreated inflammation is causing your body harm . Your doctor (along with many others) is over blowing the long term dangers of pred. New research does not make it out to be such a devil! Go back up until you find relief and trust the experience and advice of those you find on this forum. Ask that your doctor respects it too. Good Luck.
thank you .. have you had a similar experience with PMR?
It looks like you have not got your PMR under control and it is bubbling up. You need to increase to a point where you were comfortable and stay on it for say a month or do, so you are absolutely sure that you have banged the PMR on the head and then reduce slowly. You should not be taking pred and be in pain like that as it is rather a waste of time taking the pred. It is easy for your doctor to say get off pred, she does not have PMR. You will not be able to stop taking it until the PMR decides you can.
Helene, I got down to 7 mg, follow my doctor advise, had a bad flare ended up in a wheelchair. Then had to increase my dosage to 30 mg to get any relief. I now reduce slowly in small amounts. Never over 10% and NEVER if I have any PMR pain. Good luck on the rest of your journey.
Yes Helene - very similar! I was diagnosed in May 2017. started on 20 mg pred and like you - miraculous results. Came down to 10 mg where I am now) and finding it very difficult to go any lower. If I do taper lower, back come all my aches and pains and I feel very, very tired. As I said in my reply to you, I am not that worried as, via this forum, I have learned that pred is not as bad as some doctors make out. The average time for PMR to burn itself out is between 3 and 5 years so we are nowhere near that yet! We need to be very patient and, as others have said in their replies to you don't ever try and drop by more than 10% and always use the DSNS very slow taper method. I am fortunate enough to see a GP here in Tasmania who diagnosed the PMR straightaway as she has a friend with it. She listens to me and what I read on this forum. There is also a very good book written by Kate Gilbert called " PMR and GCA: a Survival Guide.
Again - Good Luck.
Judith.
Hi ptolemy, reading your reply to helen, she should not be taking pred and be in pain. Is it normal for some to be 70% pain free all the way through. i have never been pain free. Diagnosed the same time as Helen Is it more than 30% pain you are refering to?
The 70% is the expected quick improvement when you start a patient with PMR on pred - and usually it then improves further over the following weeks. Some symptoms improve very quickly with pred but others such as bursitis and tendonitis can take much longer to improve, mine took the best part of 5 months to go altogether. I still get some bursitis in my hip even now.
Some people are pain-free or near enough. Others are never pain-free. You have to learn your own version of PMR unfortunately!!!
You need to be at the lowest dose that provides relief from the symptoms - which sounds like 10mg. To get there in 10 months isn't bad at all, the median time to get to 5mg pred is about 18 months and it took me over 4 years to reliably get to under 10mg - and I still get flares of disease activity.
Yet again - a doctor who was happy enough to make a diagnosis of PMR but who won't allow the patient the only medication that manages it well and easily without some of the major side effects of immunosuppressants which are relevant to them, like you. I can't take Actemra for a couple of reasons - nor should you I think.
Thank you, I did increase the prednisone to 10mg and didnt get relief, so I made a jump to 15mg today and I will see how it goes. What did you do when you had flares of the disease activity? Did you increase your dosage?
Yes - doesn't matter WHY the pred isn't enough - if you have a flare you need more!
Sorry my bad English. I was really saying Helen should not be in such a lot of pain. You should expect to not be in more pain than when you first took pred. Most of us are never fully pain free, but at least we can start living a normal life again.
helene as a fellow sufferer i can tell you a relapse is very common and going back up in the dosage is very common,trying to use less pred is understandable but a false economy,the pred has to be above the pain or else it never goes away, i got to zero and had to go back up to 15mg,now down to 3mg, and hoping to be at zero again in three months. hopefully this time for the last time.
one more piece of advice.....go absolutely wheat and barley free, pretend you are coeliac in restaurants ,read the ingredients on everything buy gluten free bread, pasta, biscuits, avoid gravy, soy sauce and anything else with wheat flour, i cannot prove it but i am convinced from personal experience that pmr is triggered by wheat and/or gluten. start immediatly ,even before you have increased the pred, and take careful note of any improvement in your symptoms. 4 years ago i suspected wheat but had no other affirmation of my belief except personal experience that it seemed to make the pain worse, now recently i noted the wkipedia article on pmr seems to confirm this. just try to imagine for 1 full week that wheat is your enemy and see what happens good luck
I think avoiding wheat means I have less problems than I might - but it didn't made the PMR go away altogether even though I ate gluten-free for some years. But low carbs, especially processed ones, is a really good approach.
Thanx for the advice and for making me feel that I not alone in this battle. When I was first diagnosed I eliminated all gluten, diary, sugar & alcohol. There was no difference in my pain or stiffness. I did lose some weight and avoided the moon face side effect of the pred so that was a benefit. Some people have gluten sensitivities and elimnation is beneficial. Unfortunately, it didnt work for me, glad it worked for yiu.
Hi Everyone. Good site!! My initial rheumatologist moved after my second visit and I have just completed my follow-up visit with a replacement. The new one informed my GP that I only most likely had PMR. It took over 12 months for initial diagnosis after one GP recommended exercise and a second located and treated kidney stones, requiring 2 separate surgeries, and an L4 fracture. Conditions following 6 weeks of inaction for the L4 of back, hand, glute hip and knee pain led to PMR diagnosis. 15mgs of Prednisolone or Prednisone have come down to 4mg now. I have some osteo problems in most of the joints affected. I still have some minor pain in these places and am unsure if my medication level is achieving its task. I read a case where prostate surgery or its cancer was suspected as being a cause of the PMR involved in some cases. I know this cannot be the absolute origin for this complaint but am wary of immune system treatment when the system itself is the body’s only natural cancer combatant. The age of PMR sufferers generally makes diagnosis and treatment difficult as this is also the age of other similar conditions. There doesn’t appear to be much reference in these posts of the two blood markers CRP and ESR and their changes over treatment and flare-ups?? PMR needs a lot more research and data collection to establish cause and treatment options. Barrie Heslop
There may not be much discussion of ESR/CRP in these particular posts - but there is plenty elsewhere. We don't discuss the same things in every thread - even if sometimes the same things do crop up.
As for prostate ca - how would you reconcile that with the fact some 3 times as many women as men develop PMR? The stress of surgery in general may be the tipping point for some case, though by no means all, but PC in particular - I htink not.
Please comment on reasons for not trying actemra. I am considering it to get off of pred. Pred. is ruining my bones.
This site is now very hard for me to work with, everything has changed and I am not good at computerese.
but please state why you can't take actemra and why you think others shouldn't. Thank you from an old follower of this site who is still in awful pain all the time.
One of the side effects of Actemra can be causing arrythmias, irregular heart beat. I already have atrial fibrillation so it isn't advisable to add more risk. My husband has had TB, I also have a very high reaction to the skin test which suggests I may also have had it - using immunosuppressant medications like Actemra could result in a reactivation of latent TB so while I could try Actemra despite that, I would also have to take an anti-TB drug for the first 8 months to reduce that risk.
I don't say that others shouldn't take Actemra and I would try it if it weren't inadvisable for me - but the patient's previous history has a great deal to do with whether it should be used or not. Helene already has had a rare form of lymphoma, messing about with the immune system could have an effect there so she is understandably reluctant and it is a risk I personally wouldn't want to take either.
Sorry you are also struggling with the site - so are most of us I suspect!! Keep looking in - it should get better not worse. Hope springs eternal...
Yes EileenH I agree a specific cancer itself may not be relevant but I only had these 2 cases to go on. Complications following surgery was said to involve the body shutting down organs etc.to diminish loss on belief it was being attacked with knives. The immune system itself is involved in this and part of it’s function is to fight against cancer. It does this through changing blood components. I was concerned I was being treated for something they were not sure I had and if I did where it came from. Did proposed treatment herald some other risk?. PMR like many complaints and their treatments need so much more data collection that no one is attempting. They need to know where PMR stems from before radical treatment coupled with so many other “we don’t knows”. I recently declined a GP recommendation for a 7th medication. Many are on more. My current 6 have so many “side effects” no one can be certain of their collective damage let alone when combined with the ones come off and the supplements we feel we need to add. There’s nothing worse than learning afterwards the medication you didn’t really have to take may have destroyed the quality of your life!!! (BPH>Dutasteride>PCa & ongoing incontinence+) Barrie Heslop