Is My Rheumy Nuts ?

Posted , 9 users are following.

I see a rheumy at the well known hospital ranked 1st in the U.S. for Orthopedics and Rheumatology. 

Diagnosed with PMR about 18 months ago. Started on 15 good results and got down to 10. Took a trip to Europe and had to go back to 15. Stayed there for a while until I had another medical problem and 15 no longer worked so am now up to 21 with fair results. Recent ESR and CRP are normal.

Saw my rheumy for a follow-up visit today and she wants me to get off the prednisone since she thinks I'm on it too long and is concerned about the effects and that I am still not feeling great. ( fatigued, tightness in muscles of pelvic girdle making it difficult to walk for a prolonged time, spasms of the muscles, shortness of breath on exertion, lightheaded ). Sending me for another bone density test. First one was average for a 65 y.o. male.

Suggested starting me on a bisphosphonate to halt osteoporosis and a biologic ACTEMRA to help get off the prednisone.

Needless to say I'm upset over the latest turn of events since the last thing in the world I want is more medication.

At the moment I am thinking of looking for a new rheumy. Am I nuts or what ?

0 likes, 21 replies

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  • Posted

    perhaps ask some questions / do some research on Actemra. Early days yet on treatment of pmr but seems to be showing promise. There's a few posts on this forum.

  • Posted

    Hi Scott 42, do you think you have PMR? My Rheumy screwed me around till my wife had to roll me into an appointment in a wheelchair, then she upped my Phedinsone so I could get some relief. They are not God's only think they are. If you are unhappy can you get a second opinion? Good luck see what else comes up on the forum!

  • Posted

    I'm in a similar spot to you, Scott. Will be starting Actemra soon. I have a battery of doctors, and my rheumatologist, primary physician, surgeon, nutritional doctor, woo woo aruvedic doctor, opthamologist and gynecologist are all in favor of this. In my case, I've been on prednisone for two years and it's apparently affecting my muscle strength - including my heart - and affecting my liver. Also, I am supposed to have surgery but it's been put off for a year because the surgeons want me at 7 mg or less of prednisone and I haven't been able to get under 15 without the inflammation markers shooting up and the pain becoming unbearable. Also, I break out in random blood blisters which the doctors attribute to prednisone and use as proof that surgery would not heal in my present state. I'm concerned about the Actemra because of the possible side effects (death, heart attack, stroke, major infections....) but at this point I'm willing to risk it. I understand that Actemra was recently approved for PMR in the U.S. - before now it was for rheumatoid arthritis primarily. So, hopefully, we're not being used as guinea pigs and it will lead to a better quality of life. My rheumatologist did say that they're not sure how long one has to be on it - possibly 24 months since shorter times have been associated with reoccurance of the PMR. Stay in touch and best wishes.

     

  • Posted

    Actemra is increasingly being used in the USA - it has been in use for RA for some years so isn't an entirely new drug to them, and it has recently been through clinical trials and approved for use in GCA. I'm not sure how they get round insurance for PMR as it hasn't been through extensive trials, just a few very small pilot studies but it does seem to achieve good results. Perhaps they resent the dx as PMR/GCA - there is increasing acceptance they are the same disease but different expressions.

    In the meantime - providing your dexascan is good (need t-scores to say any more) I would resist the bisphosphonate. My bone density hasn't changed significantly in 7 years on pred - I took 4 tablets before I did my research and stopped! If you try Actemra you may be almost off pred in a few months.

    • Posted

      Since many on this forum have stated they have been on Prednisone for many years for their PMR I am wondering why my rheumy is so anxiuos to pull the plug on it after my being on it for "only" 18 months.

      On the 21mg currently my pain is 99% under control.....it's the fatigue and difficulty walking "longer" distances without seizing up that is my main complaint.

      Also, by adding Actemra am I just trading one set of scary side effects for another and is there any assurance that it will allow me to get off the Prednisone ? If not, then I will be on two meds that no one wants to be on rather than one.

    • Posted

      I have come to the conclusion all rheumies are nuts!... from what I read on here and my own experience, well, it`s a good description....there are a few good ones, but it`s finding them, and they are probably not in your area.....I have never understood and neither do my friends and family understand why do rheumies all have a different approach to PMR??

       

      ​Just because my ESR reading are low now....my second opinion rheumie says I don`t think it is PMR.....well even I know that because I`m on 10mg pred (from 15) it brings it down!.....so yes, they are basically nuts!

      ​I`v given up on them,  and will deal with my doctor only.......

      ​This may sound harsh, but after 5 years....it`s frustrating to say the least!

      ​Good luck.

    • Posted

      Because for the very first time there is an alternative to pred. If you live in the USA at least, It isn't an option in the UK nor, I suspect is it likely to be in the foreseeable future.

      You cannot stay on 21mg for ever - that is a high dose and associated with long term side effects which can be considerable. When it is Hobson's choice and when you are able to get down to doses in single figures, using pred is - as we say over and over again on the forums - an acceptable alternative to the disability of PMR. I've had PMR for 13 years - but currently I have no identifiable pred side effects.

      Most of us would be cooking on gas if we were on 21mg - and it would possibly be accepted for GCA since the risk of irreversible blindness is always there. But there aren't many doctors who would feel 21mg pred for PMR long term was an acceptable risk.

      Flip has been on Actemra for a while:

      https://patient.info/forums/discuss/honey-i-m-home--600508

      and there is a thread on the Healthunlocked forum with several people commenting on their experiences with Actemra - can't give you a link though.

      As I gather you won't be on 2 meds for long - either you will be able to reduce your pred dose or it will accepted Actemra does work for you to send the disease process into remission. They won't use it for fun - not at $17K plus per year.

    • Posted

      Sorry - "it will accepted Actemra does work for you" should be "it will be accepted Actemra does NOT work for you"

    • Posted

      Only been on 21mg for 2 weeks.....was hoping i could try to taper soon and get back down to my original 15 and then to my lowest dosage of 10.
    • Posted

      After 3-1/2 years of PMR I have had two infusions of Actemra...I know how you are feeling about the scary side effects. My rheumatoid and the nurses have told me to stop reading about the side effects (read the side effects of anything and it is all bad!). I read somewhere that taking Actemra in the early stages of the disease if more effective. The idea is to go into remission...stop the inflammation and lessen your consumption of the prednisone. 21m is a high dose. There does not seem to be any certainty with either drug, everyone reacts differently. Actemra will allow you to taper the prednisone quickly. At least consider it. Wish you well😊

    • Posted

      Have you been able to taper and if so from how much to how much in what period of time ?

      Any side effects or feeling better ?

      Thanks

    • Posted

      I have been on Actemra since last year -with fantastic results. I've gone from 20mg pred to (currently) 2mg. I feel so much better - and the brain fog has completely gone. The only side effects I've had is an increase in upper respitory infections, throat, ears, bronichits. I love the stuff!

    • Posted

      Yikes! You are the second person to mention the upper respitory ailments!!!

      i am having my third infusion on Wednesday...so far, great...no problems except some fatigue. I hate upper respitory infections😝 Were these infections normal, run-of-the-mill infections?....or major deals? When did you get the first infection?...could you take medicine for the infection?

      sorry to ask so many questions! Are you on the infusions or injectibles?

    • Posted

      Hi Scott, they did work, although not as quickly as I thought they wourl. And I had to take two rounds for the second infection (right ear was pretty nasty by that stage) - more info in my response to Kathy below.

       

    • Posted

      I had the first bout about six months after I started. They were 'normal' ear/throat/bronchial infections - I've always been a bit prone to them anyway.

      I took antibiotics both times, and the second time I took two rounds. That was about 4 weeks ago and It's still 'lingering'. I wake up with a screaming sort throat and sore ears.  I have a slight chesty cough

      Interestingly, neither time I had a temperature, even though it was very obvious there was in infection in my right ear - quite painful and very annoying as I couldn't hear a thing!

      I'm going to mention it to my GP when I next see her but it's not awful. I'm still working full time.

      My fatigue has improved since I stopped taking MXT - which I pushed my rhuemy into letting me do once I'd been on Actemra for about 4 months.

      I'm on weekly injections, very easy. I'm VERY glad I don't have to go and have infusions!

       

    • Posted

      Thank you for the details. I am not being totally paranoid, but I do want to watch out for the "start" of any respitory infection. I just had my third infusion of Actemra. I don't mind the infusion at all...catch up with my email while I am there. I have not had the opportunity to try the injectables.

      i can recommend a "home remedy" that I like for the screaming sore throat.

      mix about 4-6 Tablespoons of apple cider vinegar in a small bowl...add a couple tablespoons of salt (see salt if you have it)....add a half of lemon, squeezed. When you awaken in the night take 1-2 tablespoons of this mixture....it will zap that pain in your throat😊...ahh

    • Posted

      Sounds.....delicious.

      lol

      I've written it down for the next time I get a bad throat. thanks.

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