I need encouragement...

I've never heard of anyone developing PMR because of tablets.

Is there no way you can change your doctor?  There are some(!) out there who understand PMR. 

 

Statins!!!  How on earth does statins effect the autoimmune system?  Remember Mr Fred only controls the symptoms not the underlining 'problem'.

I don't know anything about statins but I started my autoimmune problems 6 years ago 3 days after an infusion of Reclast for my bones (I broke a hip and have severe spine issues). My mother died from complications of lupus and had two other autoimmunes. Some of my doctors think that since I was probably genecticlly predisposed, the Reclast acted like a catalyst starting GCA - my first autoimmune. How ironic to be given a drug to make my bones stronger causing a disease requiring high dose pred which then weakens my bones.

"Sorry that people are being unhelpful through their own ignorance." - I think that statement is maybe a bit OTT. If anyone is exhibiting any ignorance then I'd suggest that your rheumy might be in the running for the award. There is NO medication that has "no side effects" - there have been a few where that story was peddled in marketing but the truth will out when a drug is launched onto the market and is being used by many hundreds times as many patients with real comorbidities and polypharmacology as were included in the clinical trials.

I don't know where you live James - and I don't know what medical insurance system you are under, but there is no other generally approved medication besides pred for the management of PMR or GCA. There are DMARDs that many doctors use in combination with pred as so-called "pred sparers" but they don't always work or seem to allow a reduction in the dose until a flare happens - and they don't REPLACE pred unless you were misdiagnosed and actually have some form of inflammatory arthritis. PMR is a vasculitis - it just looks like arthritis.

I assume you may be talking about toxcilizumab (although that is an infusion, not a pill) which has just been the subject of an extensive trial for GCA and, if the rumours are to be believed, it has worked very well in the trials. However - the results are not yet published so it has not been submitted to the fundholders for approval and that would only be for GCA, not PMR. A pilot study on about 10 patients with PMR was done in the USA and all 10 patients who completed the study went into remission in under 6 months after 3 or 4 treatments with toxcilizumab. That was a PILOT study, they are always very small. There were plans a couple of years ago for a PMR study to run slightly behind the GCA one in the UK but as far as I know it was abandoned - almost certainly because it was realised that cost would make it a non-runner under the NHS system and they would never approve it for PMR so covering the costs of a clinical trial was not going to be an economic proposition for the drug company. It doesn't fit with your rheumy's description in the context of side-effects either - even the comapny website says very quickly that it can cause serious side effects.

There is another thread on this forum where a lady in the USA has been told she is to be put on toxcilizumab for her GCA. However, because of the fact it is not yet approved by the FDA for GCA, she would have to pay for it herself as Medicaid won't cover it for her. If her diagnosis were rheumatoid arthritis they would fund it, it has been approved there for some time. She has been told it will cost $17,000 a year. It isn't clear yet whether only 6 months of treatment will actually be enough to achieve long term remission so how long she would have to pay for it for isn't known. It is possible that other USA fundholders would cover it for off-label use - but since the majority of patients on this forum are in the UK and Canada or, if they are in the USA, are probably on Medicaid, that is unlikely to apply.

If there were another pill - especially one with no side-effects - that would replace pred entirely I think the research group I am involved with as a patient representative would have mentioned it to the charities who provide the support network in the UK. I would be delighted to be proven wrong - so I look forward to the result of your query to your doctor. I'm sure my colleagues will be very interested.

let me know how that goes for you... You never know! Right!

Ank added note: I am in the US, and when we reach 65 we qualify for Medicare.  Medicaid is for low income brackets.  However, the RX is not included in that, and most of us will get a prescription supplement with a monthly fee, and usually reasonable charges for the drugs, some common ones are not charged for.depending iupon yo9ur plan.  Quite stringent financials must be met to get on medicaid.  We pay for medicare outof our social security, it is not free, but it is good.  Elinor

I know - but Medicaid still won't pay for certain medications, some other very expensive insurances won't approve certain medications, especially when it is off-label use, Toxcilizumab/Actrema is off-label use for GCA/PMR - that may change in the next few years as trials have been going on with it for GCA but that still leaves PMR out in the cold - which is what terri says she has been diagnosed with. 

I saw my internist today.  He had started me on 40mg. pred on 11/3 and reduced it to 30 on Dec. l.  He is keeping me on the 30 for the next 3 months, then said he will start gradually reducing.  I will soon have a bone density test.  MY potasiuim was increased to 60 meq (20 3 x daily) from 40 meq., my HCTZ was increased from 12.5 to 25 mg. mainly due to pitting edema in my feet and ankles.  I never use added salt and am VERY careful, definitely read labels and use as many natural foods as I can. Also to make sure I tell my opthalmogist about the pred I'm taking, and frankly I can see that it is affecting my vision some.My lab work was not off a great deal.My cholesteral HDL went up to 110 (they checked it twice to make sure).  LDL is 97, Trig. 55.  I watch what I eat!  He said the euphoria will wear off, it has some, but still feel good.  My husband says my feeling so good is artificial, but I do not believe it; of course I feel good without that awful pain and stiffness and ability to move freely, who wouldn't?  What do you think?  I've been in pain for a few months, first in the spring from an inflamed bursa, finally helped with depra-medrol injection, then pain in hips and legs after a 5 mile, 3hr.kayiak ride stuck in one position in a life preserver, then a horrible fall in Spain on Sept. 12 when on a tour, hitting my head, hips, buttocks, etc. andliving on 550mg.naprosyin BID to get through, then suddenly PMR setting in.  So it's been one thing after another this year. And having my life back is awesome!

My hair is coming out and I have the Cushingoid effect but hey ho if I don't look in the mirror I don't  see it!! I don't like it but I have quality of life that I did not have prior to steroids. My friends have told me I'm still the same person beneath it all. I can live with that. 

I love your attitude silver, this is want this forum is all about. Trying to get other fellow sufferers to understand that they are not alone and that with the right frame of mind they can overcome most of the problems this horrid illness can throw at them. Eileen gives us the medical, technical and logical advice and always tells us straight to the point, so we all know where we stand on most issues raised. Along with judy93591 the two of you have expressed how we should look at preds and how we can live a fairly reasonable and comfortable life by using them. Some do live in cloud cuckoo land by believing everything their rheumatologist tells them, but by reading lots of the posts on here explains why a lot of us have no time for rheumy's. Keep being positive and passing it on to others and we will all get thru this one day.

My hair came out - but it was the PMR not the pred, it happened before pred. It came out again 3 years ago - again, I don't think it was the pred, it was the other bits of that rather interesting year! It' all grown back in again and I'm still on pred, albeit a different one. I have a discharge letter from hospital from then, "Cushingoid" it says. Not any more - all gone with a lot of hard work and a fairish dollop of luck I suppose. Wonder if my daughter would like to do the wedding photos again? Ones with me in that I can bear to look at. And I suppose I could now buy the full length mirror I really could do with 

Nowadays you can have your new head photoshopped on to the photos! Gosh you could even have some film star's head put on.😀😀😳😳 My hair was thinning before the steroids but I didn't think that it may have been the PMR! Perhaps it'll grow in curly, thick and green. It'll be an outer space look. Might catch on!

Thank you. I have a warped sense of humour which helps. I refuse to let this get me down. Just adapt accordingly. Had to do that many times before in my life so used to it and get there eventually by whatever means helps. 

Thanks for the chuckle. With the last GCA flare, 80 mg of pred (I've put on 48 lbs-I'm 5'1 1/2") and Christmas coming I tell my friends I'm trying out for Alvin and the Chipmunks. Do you know who they are "across the pond"? I look so different it's crazy and two people didn't even recognize me. I didn't mention what I look like when I joined your group yesterday because how we feel is what's really important. It took me awhile to get to that realization and of course I'd like to look like I used to and I do hate my moon face. I am  having trouble with pain, depression and many pred side effects. I never lost my hair but have gained peach fuzz on my cheeks with the pred. I'm now down to 40 mg since May. My adrenals don't produce corticosteroid anymore and my rheumy doesn't know how low I can go.With GCA I am much more worried about going blind, a stroke or in my situation serious spine issues due to my scoliosis and osteoporosis. With my liver autoimmune, PBC, I have a limited ammount of pain killers I can take. Eileen, thanks for all the medical advice. Living in the U.S. I don't know if some of the meds are the same with different names. Has anyone heard of Actemra? I am not proposing anyone but my insurance, Medicare or Genentech help pay for it. From the Mayo Clinic info I have been given it sounds like I may need it (if it works) for  2 1/2 years. That's over $50,000 U.S.! I think corresponding with all of you will help with my depression. Thank you!

Of course your adrenals are not producing cortisol at present - too much steroid present in your body. But it can go back to normal - many patients on the forums have been on high dose pred and once they got to below 7mg the adrenals recovered, they stopped pred and have been fine since. 

Actrema is toxcilizumab - we use substance names over here, they are always the same, brand names aren't. There has been a clinical trial which has just finished - waiting for the results and if it worked (and the rumours suggest it did) it will be submitted for approval for GCA, currently it is only approved for RA.

There is another thread where someone in the USA is asking about funding - was it you? As I understood her, she said Medicare won't fund it because the FDA hasn't yet approved it for GCA.

My doc has tried to get me off the pred to allow my adrenals to kick in. Once the GCA came back two months later. Once I got down to 3 mg (2014?)and once 1 mg (2010) before it came back. The methotrexate was supposed to keep this from happening but obviously didn't.

It was me who mentioned Medicare not approving Actemra because the FDA has only approved it for RA. I also have a backup insurance called AARP Supplement which picks up extra cost but not if the drug is not Medicare approved. If I can't find other funding do you know if the drug is available in Canada at a lower cost? Under what name?

Methotrxate won't stop it from happening - I have no idea what makes them think that at all! It may help you get to a lower dose - but you aren't the firt person to end up with a flare while taking mtx.

The substance name of Actrema is toxcilizumab and you can always find it using the substance name - it's actually quite unusual in the UK to call things by their brand name because that can vary, especially once it is out of patent cover. 

I found this from 2010 from cadth, so Canada and I therefore assume the $ sign is Canadian dollars:

"The annual cost of tocilizumab is dependent on dose and patient weight ($11,348 to $17,472 for a 75 kg individual receiving 4 mg to 8 mg per kg every four weeks, up to a cost of $23,296 at the maximum dose of 800 mg per infusion for patients whose body weight is more than 100 kg) and is similar to the annual cost of other biologics: abatacept ($18,619 to $24,825), adalimumab ($18,388), etanercept ($18,942 to $20,486), golimumab ($17,364), rituximab ($9,348 to $28,314)."

The prices don't change a lot over time usually (unless the drug company decides they can get away with it). However, the Canadian dollar is a bit wobbly at present isn't it, it's fallen from 1:1 to 1:0.74 since 2011 and that may mean the price has gone up in Canada in that time. I'm not in Canada - maybe Anhaga could ask a friendly neighbourhood pharmacist to look it up for you. 

How did that smiley face get in my my note after  the awful weight I've put on? I must have hit it without realizing. Can't wait for my cataract surgery next month so I can see what I'm doing

Possibly because you typed " followed by ) - and that is a shortcut for a winking smiley face! ")

The bit that gets me is when you type in a link - and the double forward slash and close bracket turn into something!