I have had PMR and RA for 5+ years and have been up and down on prednisone 20-5 mg, and methotrexate, Aravia, Actemra , and Cimzia. I am very active, playing sports daily, but have PMR muscle pain in my rear, and neck and have developed sclerotic tendons in my hands. I feel Im gradually getting worse as I have developed osteoporosis, and pre-diabetes, side effects of long term prednisone. I'm going to try the super slow method of reducing prednisone. It is helpful to read how slowly some of you have to go. My Doc recommends a faster protocol but it is not working. I am now also starting Cimzia. Anyone on that?
I am sorry the biologics haven't worked, and then having the reaction to the prednisone! I think it may be a good idea to try everything since you also have the RA, pre-diabetes, etc. hope you can continue the sports...that is a good "goal" to have and a great distraction from whatever ails you. I too play golf, tennis, yoga and it really distracts me...plus, when you engage in sports at our age you are surrounded by the "walking wounded"😊 Continue the search for relief💕
Good to hear someone else is very active. I think it often makes doctors minimize my symptoms. In fact I feel physically best when on the tennis court or soccer field.
Has the super slow method worked for you?
I have had PMR For 3-1/2 years. The DSNS method really worked for me, 1/2m at a time...but I could never get below 7-1/2m and that was shaky. The Actemra infusions have been remarkable...holding my breath. I know the weirdness of "looking fine" and having to limit your activities. The last year I have pretty much been "a day on, a day off" with activities like tennis and golf. Now I can have one activity a day, then some rest. Also, because of the Actemra, if I overdo it and start to flare I can recover in one day! It used to take me 2 weeks to recover. I believe Actemra will become more widely available in the nit-to-distant future...but everything has ramifications...we will see.
Keep trying whatever you are comfortable with😊
I feel much better with my Vit D3 blood levels in the mid to higher normal range. This might require taking 5-8,000 units daily . Recent research these levels help mitigate autoimmune symptoms. Testing the blood level, after a few months is the only way to know what is right for you.
Sensible sun is also a good way but impossible in winter in Northern locales.
The Vit D from sunlight is stored by the body but supplement D3 requires regular dosing.
I had to get off Actemra due to a side effect of very itchy hands and feet and worsening iof sclerotic tendons in my hands. The itching is much better i.e. That I'm off but PMR symptoms are worse. I think I'll have to up my prednisone and hope Cimzia will kick in soon. Cimzia is more for RA though so I don't know if it will work on PMR.
I take the big green Vit D pill 1x week, and last test my D level was Ok.
I remain very active, just don't like the discomfort. Its worst at night.
Keep any and all advice coming.
So glad Actemra worked for you!
Do you think infusions are better than shots?
I was told my Blood level was "OK" when it was the lowest normal level:30.5ng/ml US measurements are 30-100. This is a rather wide normal range. I felt terrible at that "normal" reading but when I was over 50 I started to feel great. 50 is considered "optimal" by recent researchers. This is the level that people who get constant sunlight and are healthiest near the Equator.
My docs have no problem provided I stay in the normal range. Another guideline is going by how you feel in a dose.
Thanks! I'll look into that!
Sounds like you really need off the pred due to onset of side effects. My word 5 yrs.!
I was hoping to beat this PMR in 6 mo.'s or less. This is my goal.
Try the . Its holistic medicine so your Dr. More than likely wont recommend it.
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I doubt anyone on here with just PMR is on Cimzia, it is an anti-TNFalpha drug which are specifically warned against and not recommended in PMR and GCA.
Since you mention the pain being worse at night, are they sure it is PMR you have? If Cimzia works for you that may be because it is ankylosing spondylitis which can appear very similarly to PMR but the night time pain tends to be earlier, around 2am or so rather than 4-5am.
The pain in your buttocks may be due to piriformis syndrome or, more likely if you also have neck pain, myofascial pain sydrome. That is better treated in a more targeted manner - either with steroid injections or manual mobilisation techniques by a sports physiotherapist or therapeutic massage therapist.
The underlying autoimmune condition that causes the symptoms we call PMR lasts between 2 and 6 years for something like 75% of patients. A few are able to get off pred in under a year but are at a high risk of relapse. The rest of us take even longer. I have had PMR for 13 years and have been on pred for 8 of them. Anyone who gets off pred in 6 months very probably didn't have PMR in the sense we talk about it on this forum - PMR is just the name given to a set of symptom and there are differing causes.
You can't "beat" PMR - you have to learn to live with it and wait patiently for it to go into remission, a process that no-one has found any way of speeding up yet. When you accept that you are able to devote all that energy you wasted fighting it to living well with PMR by working around it - which is perfectly possible. Google gorilla in the house by Batsgirl - an allegory about living with chronic illness.
Thanks for answering the question I hadn't asked yet - why did you get off Actemra. (I've had my first infusion and am very hopeful,since I was able to drop from 15 mg prednisone to 12.5 without increased discomfort. On the dead slow method, I couldn't get to 13.5 without a big flare.) Regarding the itching - I have severe itching of my lower extremities which doesn't respond at all to scratching (pre-Actemra, while on prednisone). The doctors look at me blankly, like they've never heard of it. I've found that aloe applied topically eases this, sometimes I need to do it twice, but it works. Itching happens only at night for some reason,
My itching was much worse at night, too. Its mostly gone away since off Actemra. I also have atypical RA which is why the Cimzia has been prescribed. Both my presentations of PMR and RA are atypical, as functionally, I do very well. Full days with high intensity sports 5-7x a week. But the muscle and or joint pain seems to be totally dependent on my prednisone. Was off altogether for 9 months, and then on 5 or less for another year or so. Then flares have me back up to 15 and STILL symptomatic. Going to try the super slow method after reading g this forum. Thanks everybody for recommending that!
Bethune, I think " infusions " in British English means injections...I made that same mistake...I thought infusion was like a tea and couldn't understand how everyone was drinking Methotrexate in a tea ..😂😂
In the US infusions usually mean an intravenous delivery, slowly put in through a needle in your vein, not shots.
Hahahaha, sorry Bethune...I'm always mixing up British and American English...master of neither😯.
So, Actmera is also administered intravenously, like chemotherapy?
It can be, or you can give yourself shots... that's what I did... maybe intravenous is better. I didn't bother to try because of the itching, and also tendon sclerosis in my palms and fingers got worse on Actemra.
Chemotherapy can also be administered orally - it is the type of drug not how it is given.
"chemotherapy: the treatment of disease by the use of chemical substances, especially the treatment of cancer by cytotoxic and other drugs."
I have bad itching on lower extremities, too, always in a different place.. I just take pred and a BP medication ( lorasartan), so it must be a side effect of one or the other for me. Although, to come to think of it, I had itching in one arm for years, the dermatologist told me it was from exposure to the sun, an allergy of some sort but nothing he prescribed took the itching away. . Then I read that it could have been due to a pinched nerve ..so I guess itching can be caused by many things, like nerve damage in diabetis ..it is a royal nuisance, I think I prefer pain to itching!
I use lidocaine patches and ice packs to ease the almost nightly itching but before I discovered this, I used to wake up with bleeding scratches on my body that I unconsciously scratched during sleep.