I am so discouraged. I am on my third year with this and every time I get down to 6 milI grams of prednesone the symptoms come back as bad as they were initially. I am 67 years old never been overweight and always exercised and tried to eat healthy. So guess this crippling condition dose not care how you have taken care of your health. I do not understand why this is not heard of. When you tell someone what you have they look at you with this big question mark look. Getting on here and seeing others going through what I do is good therapy. Helps me keep my sanity in bad times and realize I am not crazy or alone..
Discouraged: I am so discouraged. I am on my third... - PMRGCAuk
Discouraged
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Schurch
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Don't want to discourage you any more but I've just compleated 3 yrs. and can't get below 9.5mg. The mean duration is now considered to be about 6 years ( sorry )
I am so sorry you are suffering like I am. I did read somewhere about the 6 years. My doctor told me 2 years, maybe he did not want to discourage me from the start. Yet the made me too confident it would not take this long. So far no giant cell problems, praying that never happens. My doctor calls that the evil twin of this condition. So try to remember things can be worse.
Hi, I'm fast approaching 5 years of G.C.A. my anniversary is on 23/12/18 and I'm down to 6.5 mg. Mind you I have loads of other problems the worse one being Klinefelters Syndrome which I was born with, but only found out when I was 46 after seven yes SEVEN rib fractures and a metatarsal break in my left foot. I've had Osteoporosis since I don't know when its a side effect of Klinefelters, along with Varicose Veins. I've had a trigger finger, tennis elbow. I fractured a spine bone on 21/03/16 throwing a leaking radiator over the railings at the back of the terrace. Depression started with death of my darling wife on 26/04/16.
Not to worry it will all come out in the wash
hope you have a nice Xmas and a happy new year
I feel discouraged at times too. currently stuck at 10/9.5, tried progressively slower tapering, third go at it this week. All the factors that must be considered trying to solve the puzzle of dosing/tapering is mind boggling. I think I've tried taking my dose 5 different ways now from all at 8am to a variety of split doses at various times, but alas that seems ever-changing as well.
It sure would be nice if people recognized (and understood) PMR/GCA. My dream is that you folks over the pond, who are much better organized and mobilized, can make a big dent into the research of PMR, and get us on the map (sorry to add even more pressure). Till then, we'll have to do our own educating individually so at least those around us can better support us.
Here's hoping your taper does progress, eventually.
I am sorry that you are having such recurring PMR symptoms ,l am afraid to lower my dose of Pred for the same reason ,at least l am managing on just 5 mg.,lf you are feeling better on a higher dose than 6 mg.,l would stay on that dose.many of us seem to have to stay on the steroid for years. I know how you feel regarding trying to explain PMR to other people,only the other day l met my niece unexpectantly in a garden centre,l had not seen her for over a year,and she remarked how well l looked.l did not mention steroids or PMR.That is the problem we have,we may look OK but are lucky to have ventured out far at all without being overwhelmed with fatigue ! I hope that eventually things will get better for you .Take care xx.
Greetings Schurch 
(First: n.b. I'm not a medic and only speak from experience/ all I've learned here on my nearly 4 year PMR journey).
Sorry to say it but your story sounds fairly typical of the course of PMR, and many of Us Lot here can relate. There is some old / outdated wisdom in the medical profession that PMR usually burns itself out in a couple of years. But more recent research indicates that the median duration is far longer (5.9 years, I think).
Yep, some people seem to recover in 2 years or less - and it also appears that there are differing strains of PMR - which might explain how a few people get off so lightly.
The 6mgpd +/- Pred 'hurdle' is quite common, due to this being around the body's usual physiological need for Cortisol (approx. 7.5 mg) vs. a reducing Pred dose - which leaves a deficit. Many of us have experienced this, myself included. Getting from these levels to the elusive Pred Club Zero can take far longer than from the onset of the PMR journey. So, as the Aunties say, Slowly Does It as you reduce - even at low-ish levels of Pred. It's important to keep in mind that due to the Heterogeneity of PMR, even with the most gentle Pred tapering approach, it can have a mind of its own and will only give us a break when IT is ready to!
I agree - PMR doesn't seem to discriminate between people who are otherwise healthy / do / eat all the 'right' things and those who are less so. Many here report being very fit and active pre PMR (me too), and the possible causes are still a bit of a medical mystery. That said, possible culprits / triggers seem to include any or all of: age (usually over 50), gender (mainly women), ethnicity (mainly but not always Northern European descent), excessively Stressful events, Trauma, Viruses, Infections and Co-morbidities. And, possibly, Genetics (e.g. PMR or similar runs in the family).
As you say, the main thing is to try keep a level head / your spirits up when battling with the vagaries of this Cinderella illness - and to remember that you are NOT alone or going crazy. This Community is one of the best going for advice and support around all things PMR (and GCA) - we have a bit of Fun too. That can help during the tough bits 
Hope this helps, best wishes and keep us posted.
'Uncle' MB
Oh my goodness thank you, this does help. I am so glad I found this suport group.
That's how most of us feel.
I would have said what he said but my typing skills are truly naff.
You can always copy and paste it scats... 
Thanks Mark wouldn't be the first time!
No worry, if any of You Lot ever copy and paste my (usually silly - but not this time) stuff here I don't take offence. It's more of a compliment (so long as I get a mention ha ha..)
Ah but we couldn't plagerize as your writing is immediately recognizable.
Ohh bunnymom.. don't know whether that's a good or bad thing!
Lol yes indeed. Merry Christmas.🐻
Heterogeneity - I need to look that up!!!!!! ha
Try saying it quickly after a few drinks...
PMRproAmbassador
You have found the dose you are looking for. 7mg is the lowest dose that manages the inflammation - so stick there and stop forcing a reduction and you will be much happier in the long run. If you take the right dose, you will probably not be crippled and will be able to function fairly normally as I and many others here do.
Some research done years ago came to the conclusion PMR lasts 18 months to 2 years. Lord only knows how they came to that idea but they did. Maybe our parents generations who developed PMR didn't have as high expectations of what they could do at over 60 - my grandfather and a great aunt both almost certainly had PMR and lived with it for years with no treatment, pred was a recent development.
It took me over 4 years to get below 9mg. The median duration of management of PMR with pred is 5.9 years. You have got to a low dose, about the same amount as your body makes naturally and needs to function. Make the most of it.
People look at you as they do because it is a big double-barrelled foreign sounding name. You even find healthcare professionals who can't pronounce it - and call GCA giant cell arthritis instead of arteritis. Two very different things.
Thank you for all you said. Makes me feel encouraged again. I am going to take your advise and stop pushing it. Just recently discovered the 6 years length of time for this. Now realizing I am not as unusual as I thought.
When the Rheumy took me off the pred a bit after 12 months - I said to my GP "Do you KNOW people who are off it in a year" - to which she said "oh yes". Well I don't believe her - I think she was having me on. They are few and very far between I would think. Or else left in the state that I would have been if I'd gone along with their plan!!
Well said Powerwalk. Makes you wonder how many GPs or Rheumies get their PMR Patients off Pred fairly quickly - but don't track their progress and / or the (still) suffering PMR Patient finds another Medic who is more flexible in their approach to tapering...?
I had a temporary GP like this. She was emphatic that (q.) "I get ALL my PMR Patients off Pred within 2 years" before making a veiled threat to discontinue prescribing it for me. Grrrrrr.... :-<
So... MB-style formal letter to said GP's Practice Manager quoting Prof Dasgupta's recommendations around flexibility in Pred tapering with PMR Patients and registering my dis-satisfaction both with the GP's knowledge and attitude. Double Grrrrr....
Result? Immediate re-appointment with a senior GP who 'got it' re. the vagaries of PMR and tapering, listened to me, and was quite happy to leave it to me to make my own judgement as to when and by how much to taper. Open Prescription ever since then.
And that was 12 months ago...
Oooh well done!!!! My GP gave me a 6 month prescription the last time - she could see I was going nowhere!!! Trouble is when its up - that could be a whole new ball game. It depends on her mood - I may well get the "we have to refer you" lecture again!!!! Which is fine - except I don't think it would make any difference - I still need the pred! And it will cost me a fortune cos I have to pay the GP and the Consultant.
Yes doctors need to be honest with us. I was told two years. I guess they do not want to discourage us. As I can see there are plenty of us looking at a lot more than two years. Thank God for this group. Now I know there is nothing unusual about what I am experiencing
Hi
I can join you thier as so can many others, 3 years got down to 7.00 and all the was back to 15 now but you just pick yourself up and start again as we have no others choice.
I am 64
Perhaps just sit at your perfect dose for a long time. Eventually it will shift. I am the same, even 6mgs is pushing it a bit, but at least I can function in life. Worry not, you are not alone. Well done for keeping fit.
No you are not. Either one 😘
I have the same problem at 5mg now any reductions very slowly puts me back where I was . I made it to 4 mg for a while but was never pain free , your right what you said about this disease , outside of this group I don’t know anyone with this condition
I was surprised when I was diagnosed and told people at least it's not rheumatoid arthritis, just how many knew of others with this condition or others who had had it (Mother of a lady who is 80 so probably no treatment then and her daughter said the condition was a recurring one.)
Only 18 months of treatment and comfortable on 6mg, (mostly) but rheumy didn't like that the inflammation levels were up so she wants me on methotrexate. Another experience to try next year.
I'd be back at 7mg before I'd try mtx. 1 or 2mg more pred has fewer potential side effects than an added immunosuppressant drug IMHO and also of a top immunologist I talked to this summer.
Could you explain that a bit more please? Is methotrexate only used at onset also? Just prepping for rhuemy appt in January.
It does seem that Methotrexate has more chance of working if you start it right at the beginning of diagnosis. Although I think the jury is still out as to how well it really works for helping to reduce pred. Doctors, being dead keen on reducing doesn’t matter what, tend to push Methotrexate at any level of dosage even though it may be a waste of time and just adds to a patient’s side effects.
It depends on where you are. It seems to be used in tandem with pred right from the start in some European countries. In the UK most doctors seem to wait. The most recent recommendations for PMR mention it and come to the conclusion that it may be worth trying but only with the agreement with of the patient since the evidence it makes much difference is weak. In the case of GCA the evidence suggests that if it is going to help, starting it right at the beginning is best, within the first month. That will be said in the new guidelines due to be published in the spring - at last!
rheumatology.org/Portals/0/...
Methotrexate, even at the lower doses used in rheumatology, is not an innocent. It has potential longer term effects on the liver and lungs and the immediate side effects such as nausea, hair loss and so on can be unpleasant, I tried it for a month to please my PMR/GCA expert rheumy because he says he has had good experiences with it. Prof Dasgupta in Southend, with whom he had worked, swears by leflunomide. Which can be equally as unpleasant, if not more so! I didn't suffer the nausea, but my hair fell out in clumps within a few days, I itched all over, I bruised badly which I had never done with just pred despite being on anticoagulant therapy. And the fatigue that started after about a week just got worse and worse. That was the final straw.
It is an immunosuppressant drug and there are immunology experts who feel that doubling up pred (a mild immunosuppressant) together with further such drugs poses a threat to the function of the immune system and, when used over any length of time may lead, in the longer term to an increased risk of cancer because of the effect on the immune system. I had a long discussion with an immunologist about it in the summer just after I had tried it. Her opinion was that I was quite justified in my scepticism.
I had a terrible experience with methotrexate. But this is not unusual for me. I either do really well with a drug or really bad. The doctor was hoping to use this so I could get the pred down. If any of you take it and things start going wrong you are not crazy. I believe it did help my pain a lot BUT. First came nausea. What scared me something awful I started symptoms of temporal artery. Then my acid reflux got so much worse. I stopped it myself, because I knew this was the only thing that had changed. It took me about four weeks for all the symptoms to go away. I know most people would not react as I did. As I said,I am very sensitive to meds. If you can take it i really believe it works for pain. I was again so discouraged, I had so hoped it would be my rescue from the pred. The doctor had not had a patient react to it like this, I was not surprised. So just in case there is someone out there like me I wanted to share.
I've had PMR for over 5 years, my GP said it would be 2 years or maybe for life! I was stuck at 3mg for 2 years, wishing I could get down further, then I did a lot of very heavy gardening and the pain came back, I had quite forgotten how bad it was, and in my wrists as well which I didn't have before, I'm now on 10mg and still got a bit of shoulder pain, so just have to accept it, this community is a blessing, as I don't know anyone else who has it and I had never heard of it
I have had PMR for 4 and a half years and a month ago was on 3mg but arms & shoulder aches became too much and Dr suggested back to 5mg for couple of weeks. Aching has improved and in New Year I will try .5 mg reduction. Possibly! My usual GP chanted a few months ago that "we want to get you off the steroids asap" and prescribed a reduction of .5mg monthly. Like many here we know this is a far too quick reduction but I followed her instructions only too aware that I would be in the situation I am now. I'm desperate to stop the Alendronic acid as well but new Dr says to stay on until May when I should have a bone density scan. First scan (2 yrs after starting steroids) showed osteopenia as borderline in a couple of places. Initially my Dr indicated PMR would last a couple of years. I suppose another year and a half of PMR is tolerable. Last night a friend told me she has just been told she has PMR, and another friend said her sister in law has it also; both are 62 yrs old.
Kate 1978 I too am so glad I found this community. I did not take my last flareup to well. Reading everyone's posts has helped me so much. I love my doctor but because I believe he was not being clear of how long this can take, and all the setbacks. I believe that made me feel like I was weird and no one else is doing this. I plan on asking him what percent of his patients suffering with this. I think if the number is high enough, it would benefit us on starting our own group and meet maybe a few times a year. I have thought twice in 3 years that I was over it and should be able to cut down to very low dose of not get off ofor it completely. Failed both times. Even on 7 mil of prednisone I would feel tired and the familiar pain would be back. Before pred I could not do much it hurt to turn my steering wheel. I could hardly throw the covers off me in the morning let alone walk well.
I'm right there with you. I get so tired of explaining what this is, even doctors don't understand. I saw a dermatologist recently for warts I have under my fingernails & on the bottom of my feet. She was shocked I had been on a steroid for over 2.5 years & said because of that my immune system can't fight off the wart virus. She knew of PMR as her mother had it, but she said it burned out with in 2 years, so I was unusual. So frustrating!
Me too I got down to 1 mg of pred per day had my blood work done and my sed rate was 76 over the charts now I am taking 5 mg of Medrol will see how this goes. I too am at 3 years and very discouraged
My story is like many here...5.5 years on prednisone...happily sitting at 5 mg., will try a .5 taper (again) after New Year.
I have been down to 2 mg pred a few times, then had a screeching flare and returned to 10 mg briefly, before slowly tapering back down. My current level of 5 mg seems to be my "sweet spot", and I am content for the time being.
Bone density is excellent, tested annually, I do not have blood sugar issues or diabetes, no cateracts, minimal weight gain, little pain, unless I overdo...then I manage it with some otc Tylenol.
My biggest issue is intolerance of STRESS. I've had plenty in past 5 years, including death of son, and family fissures. Now I recognize my limits, and plan accordingly.
Here's my message to you..., dont stay discouraged...pull on ur big girl panties, and go do something that makes u feel good. This time of the year allows for lots of opportunities to "get outside of ourselves", and help others...
Kind regards, Jerri
Pmr diagnosed 2013.
I am sorry to hear about your reduction. I was told by my last doc that GCA was gone. So I felt pretty good and went from 10 to 9 then 8 rats crashed n burned n now back to 15 to get head ache n jaw pain to go. Had gone first to 12.5 but it did not help. At least it is not 20again. My new doc is a nurse practitioner and she actually know about pmr n GCA. Anyway I am with you on being discouaged. My FNP she wants me to get things settled then try the dead slow I gave her a copy n she liked it. My problem is I start it then feel fine n go down to fast. My labs were elevated so she gave me standing order for every two weeks. So I will try to do it right this time. Geeezzz
Schurch,
You are definitely not alone. One thing we learn is patience. 6mg is not that bad considering were we started (I started at 60mg). This is a tough road, PMR and GCA, but we will eventually get through it and you have a lot of company on this journey.
I'm similar in most respects. Reducing in 9 months to 6.5 mg, I have been forced back to 7.5 mg during the past 6 months, where I shall happily sit awhile.
But I should have backed off months earlier.
This says it all:
"The mean daily dose at 2 years was 6.1 mg and 7.2 mg at 5 years."
Oh I know wht you mean - my sister is a nurse and SHE never eve heard of it!!!!! Kinda says it all!!! Very best wishes to you. All together as we climb down the rungs of the Pred!
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