Question about my PMR journey
Posted , 12 users are following.
I am a 65 yr old female. I have had PMR for 6 years. I have also bed on prednisone just as long. My first 4 years I never took above 10mg. My last 2 years I've fluctuated between 10-20 mg. My pain has always been in my hips and upper legs. INTENSE pain in piraformis muscle. Also the side of my left hip. After tiring of my RHUMY who seems to do nothing I got an MRI on my hips to rule out other issues. They found nothing abnormal. Dr. suggested PT for the hip but I opted for a chiropractor. 7 sessions and exercises and it was total relief. I felt I was taking prednisone
for just that for two years.
Determined to get off this stuff I've gotten myself down from 20 to 10 mg. Now the hard part begins.
I find that after minimal walking or working in the yard my thighs and upper legs are killing me. Never happened before . If I use a rolling stick it subsides a bit. I've never had this before I've been an active cyclist in the warm months. I also swim and kayak. I'll admit this winter I have not been real active.
This has come on in the last few months. I feel as though I've run 5 miles, as I used to be a runner.
Is it the PMR? Is it the deterioration of my muscles?
Eileen can you help?
0 likes, 11 replies
Handbrake pam7653
Posted
HI Pam,
Whilst this PMR Journey varies so much with each of us and researched explanations that help our understanding is still very limited Im still hopeful that sharing experiences may show common themes and possible pragmatic solutions to our issues,so thanks for sharing your experience . I was diagnosed with PMR in 2014 previously fit and active age 54 .. and just starting menapause so possible hormone change link. like most people i was reluctant to start prednisone but 8 months in and frozen shoulder later DR gave me injection and relief persuaded me to start treatment. However, i reacted badly to oral tablets ( falls, tingling scalp, ocular migraines etc) so rather quick reduction to 5 mg daily then slowly thereafter .. tablet treatment lasted eight months so like you i started exercise with a body coach, slowly started back at the gym. progress was slow and i needed to plan rest days between but still had to keep moving as periods of inactivity (sitting etc) caused pain in piraformus muscle and left hip . ( even had a dream that i had no bone in my leg !) I did consider going back on pred but my dexa scan now showed osteoporosis changes in my left hip and i was ble to get relief with exercise the occasional paracetamol . I did research piraformus syndrome however , treatment options were again pred , exercise and suggestion of botox to relax muscle .
3 years post pred and most days are good, I got myself a puppy so walk daily and for most part active with family and managing to look after my mam etc which I couldn't have even contemplated in 2014 , Even though my exercise tolerance is no where near that before PMR diagnosis I am thankful that i continue to make progress and Ive learned to adjust to the new me.
EileenH pam7653
Posted
The hip and back stuff you describe is what I put down to add-ons to PMR - in my case myofascial pain syndrome involving (not only) the piriformis and trochanteric bursitis which I think is fed by the PMR once it starts to flare so I struggle to get it under control except with steroid shots but once it is OK it remains so for at least a year. As long as they are well controlled I usually find myself able to cope with the PMR on a lower dose of oral pred.
I'd suspect deterioration of the muscles with little activity and aided by pred and now you have so much less pain you are going to have to start from scratch with the "training". Something similar happened to me about 6 years ago after a major flare, I think due to a dodgy batch of prednisolone given the new 5mg tablets didn't control the PMR, the same dose in the new 2.5mg tablets did! I was switched the methyl prednisolone as that was the only option here having moved not just house but country. That was an utter disaster bringing on total immobilisation with back pain! That was sorted separately but there was considerable muscle wasting in my thighs and I was very wobbly and on crutches after an achilles problem. Once I was switched to prednisone in the forum of Lodotra/Rayos the muscle built again but it took 6 months of slow, gradually increasing length walks around the village where the hills were very short and/or quite gentle.
I don't think there is a quick answer. Lowering the pred will definitely help. And then it will take patience. But I would be asking my GP for some reassurance that there is no real muscle wasting going on by at least checking the creatine kinase level in your blood. And maybe some more general checks?
pam7653
Posted
Thank you for your advice. The Rhumy wants me on a biologic (HUMERA or Embrel) but am hesitant. A cyst on my pancreas that I have had for years keeps me from trying these drugs. I read they can cause cancer. They monitor the cyst yearly. I've also been diagnosed with osteoporosis in my back (borderline) and osteopenia in my hips. I get PROLIA shots twice a year for that, as oral meds irritate my stomach.
My cholesterol is 280, my triglycerides are 375, and my blood sugar is 124. All of these rising number are due to the prednisone, I need off of it!
Its a constant battle to choose no pain or watch my body fall apart.
There is limited information in the US on PMR.
I look to this forum for info.
I will look into the blood work you suggested. I just don't want to go up on the pred when I've come this far. My plan was to do Eileen's dead slow plan under 10 mg but I'm stuck here at 10 in pain waiting for it to subside till I do.
Handbrake pam7653
Posted
Heck Pam they really are tough choices for you at the moment ! I can understand your hesitation with Humera ... too many reported risks due to risk of coming into contact with infection add to that your pancreatic issue I really feel for you. Vegetarian diet.. plant based.. in particular may be helpful to you ... anything that reduces inflammation, boosts calcium and remember your ability to metabolize food could be compromised ( pancreas) so you possibly need to eat more veg than recommended levels to get an adequate intake . If you can get your pain under control ( be it upping your pred until you achieve painless activity ) and focus on an anti inflammatory style diet you may find reduction of your meds becomes easier over time .
pam7653 Handbrake
Posted
I went on a vegetarian diet, I should say pescatarian diet, I eat fish and seafood too, last August. I've been juicing in the morning too!
If I eat red meat its maybe once a month. This was suggested by my Integrative medicine Dr.
I'm sitting at 10mg right now, but I'm miserable
I was also given a RX of Leflunomide. I tried it for 3 days. The heartburn by day 3 was unbearable. I took myself off of it. I'm now on an OTC omeprazole to help with the heartburn. Methotroxate caused gastritis to that didn't work either. I may try the Leflunomide again after I settle my stomach down. I had a little heartburn before that med so maybe if I get it under control I can try again. I was trying to find out if i could take it under the tongue, but the pharmacist knew nothing.
I'm at the point now I need to up my pred a little. I'm miserable, then drop it with the dead slow method. I'm a very active person typically, but this is slowing me down for sure.
Thank you both for your advice. I'll keep
you informed on my progress!
EileenH pam7653
Posted
Why Humira or Enbrel? They are anti-TNF agents which are specifically mentioned in the 2015 Management Guidelines and strongly advised against in PMR.
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Recommendation 8
There is a great deal of information in the USA about PMR if the doctors care to look for it. The guidelines I linked above are issued by the ACR and EULAR together and a lot of research was done by the Mayo on populations in Minnesota. I will grant you though that the forums are mostly in the UK - but that is because 2 of them were set up by the charity which was formed after 5 ladies in the UK met here on this forum over 10 years ago! There was only a forum in Canada (I think) then and it has since become defunct. Attempts to set up one in north America have failed as it seemed impossible to get a critical mass which really is required to keep a forum active.
Twopies pam7653
Posted
Im in the US too, kinda in the sticks. i saw a rheumy once in the beginning, after being diagnosed by my gp. he told me i had a choice--he would treat me or my gp could treat me just as well, he didnt care. so i opted for my beloved gp who lets me manage my own dosage of pred as needed--thanks to this forum. i joined a couple of closed US facebook pmr groups but they were not helpful--there was no mention or understanding of the dsns method, they advised you to take all kinds of accompanying drugs, etc., so i dropped out. Plus they were very adamant that only a rheumy was qualified to treat pmr.
i got pmr in sept. 2016 and am currently on 5 mg. where i intend to stay at least until fall. i am much less active than you; thats putting it mildly. im not one of the lucky ones, im never pain free; mornings are hard. it sounds like you might be overdoing it with the exercise. like you, im driven, always have been. but ive watched my body fall apart. i do what i can and fully expect that as the pmr recedes, ill be able to do more. its so maddening not to be able to do the things i used to do, but my body wont let me. a hard, hard lesson for sure. best wishes to you.
Tinapoly1 pam7653
Posted
Hi Pam, I got PMR 18 months ago & for 3 months no one knew what was wrong with me & I would scream when my fiance with lift me up or sit me down.I could only walk about 3 inches & it was so painful. My CRP was off the charts at 50 to 90 to 94.7 & when I finally went to my rheumatologist he diagnosed me and in 2 days I could walk,sit ,& stand again. In this time I eat like a bird but still gained 50 lbs from the prednisone & lost most of my hair which was thick & very long . I was thin my entire life so this is all so devastating to me. The dr. said I should have died from a massive heart attack or stroke with a CRP that high. In 18 months I have slowly weaned myself down from 7.5 mg to 5.mg but was on a high dose just for a month before that. My started in my hips,pelvis,& back of my upped legs. The the next attack when to my collar bones & shoulders.I was under a lot of stress not long ago and even on prednisone it attacked both areas in addition to the sides of my legs & my wrists but better now. My question to you since you were so physically fit was were you able to keep all your prednisone weight off by exercise ? Hard for me since I need 2 new knees but am putting it off as long as possible. Best wishes , Tina
pam7653 Tinapoly1
Posted
I've never been on more than 20mg of prednisone. This is year 6 for me on pred. I've likely gained a bit of weight but I'm 65 so I think it was coming regardless. I cycle only on the weekends. The past few years I've had no issues cycling. Iswim across my lake and kayak too a lot! I can put in 20-50 miles at a time on my bike with no pain. I sure hope I can continue this summer.
My goal was to get off the prednisone!
I pray I still can.
EileenH Tinapoly1
Posted
The best way (tried and tested by many on the forums) to deal with pred weight is low carb eating. Studies have shown that exercise is greatly overrated in the context of weight loss - not least because you have to do an awful lot to burn calories and if you can't it won't work, but also because the extra exercises makes you even more hungry!
I lost 35+lbs on low carb and maintain my weight no problem at all on 15mg pred (again). It is also helpful in reducing the risk of steroid-induced diabetes. And avoiding simple carbs and sugars also often improves the PMR inflammation.
karenjaninaz pam7653
Posted
My CRP was 111 when I was first diagnosed at age 73; I felt terrible but no one ever told me I was in danger of a heart attack or a stroke. As soon as I was prescribed Pred 15 mgm it went right down and never went back up again.