New and Looking for those that get it...

[itsnickers]

Well, I'm new here... ferociously riding the spikes of the PMR dragon. Some days I'm winning, other days I'm losing, so that is why I am here. I have great support systems, but they just don't get it and I need to communicate with those who get it. People that get that I'm only 54 and my life looks NOTHING like it used to. People that get how hard it is to do things in the morning; normal things that should be so easy. People that get why I refuse to take the zillions of prescriptions my Rheum wants me to take. I am 6 months in, down to 9 mg PRED from 40mg and would love to know if it's normal to have days where I can't do anything even after having days where I am somewhat normal??

[DorsetLady PMRGCAuk volunteer]

Oh, have no fear we all GET IT!

Bit concerned that 6 months in, you are still having such differing days.....sounds as if -

a. You trying to do do much on the good days? If so, that inevitably leads to a bad day. You may well need to learn to pace yourself better, and

b. You have reduced too quickly so are not taking enough Pred to control your illness activity.

40mg is a very high dose for PMR, are you sure that’s all you have? It’s more like a starting dose for GCA.

And what are the zillions of meds that your Rheumy wants you to take? You might find some help.

You might like to have a read of this post, including the subsequent replies/questions - you may find it explains things - healthunlocked.com/pmrgcauk...

PS - when you feel able, can you put a potted history on your profile please - helps us to help you

[itsnickers in reply to DorsetLady]

My Rheum wants me on Methyltrexate, Boniva, Celebrex, and Omeprazole for starters. Plus there are others plus Folate IF I were to take the Methyltrexate. I am very sensitive to medications, though doing well with the PRED, and I work full time as a teacher, so I need my wits about me - no time for nausea or dizziness.

I have actually seen 3 different Rheum's now. One was a consult with Mayo Clinic who thought I could wait for the Methyl. My (now 2) present Rheum's do not every ask what I am feeling, even if I share. They just state to take the medications they are prescribing.

Also over the last 2 months my hands have been pretty severe; they weren't even involved when I started. My x-rays though show nothing and no evidence of RA either (which recent Rheum thought I might have as well).

While some aspects of my situation do not seem very PMR, my symptoms seem very PMR to me and not other Autoimmune disease.

THANK YOU to all who told me that my taper was very quick. I agreed with this from all that I HAVE researched but again, my Rheum's keep telling me to "taper faster, taper faster!"

I could go on... My gosh, I already feel better and relieved just reading these few reply posts. THANK YOU all for listening but mostly for understanding...

[PMRpro Ambassador in reply to itsnickers]

I can only suggest you look for a more sensible and realistic rheumy!!!

What on earth does he want you on Celebrex for? It does nothing for PMR, NSAIDs don't.

If you don't have stomach problems - why add omeprazole? Which would increase any need for Bonviva. Have you had a dexascan? No dexa, no Bonviva - show me I need it first. I was handed it automatically, after 11 years of pred my bone density has hardly changed from the perfectly acceptable level it was at to start with.

Methotrexate? Why? You have reduced perfectly well without it. Who started you on 40mg? That is a very high dose for PMR.

[DorsetLady PMRGCAuk volunteer in reply to itsnickers]

Don’t need to add anything to PMRPro’s post....other than we do hear stories like yours, and unfortunately quite a lot from US - sad to say your Rheumies don’t seem to have a very good grip on PMR,

[Noosat in reply to itsnickers]

From some of the articles I have read here in U.S. many rheumatologists are not very knowledgeable about PMR. It seems the usual is "it will last 2 years or less." Wrong !!. I am glad I stayed with my GP. After 25months I know he would like me to be prednisone free because of the effect on other parts of my body, especially eyes. However, he has left tapering completely up to me. He says, "you know your body better than anyone else." I am down to 1 and an half mg. None of it has been easy and is not easy now. I have accepted that I will not play tennis again nor mountain hike, but that is part of the life process.

[itsnickers in reply to Noosat]

My GP says I have to see a Rheum......maybe I can change that!?!

[DorsetLady PMRGCAuk volunteer in reply to itsnickers]

I think that’s standard procedure in US.....

[PMRpro Ambassador]

As DL says - we all get it!!! In spades ...

To have reduced from 40mg to 9mg in 6 months is very fast and may be part of the answer. You need enough pred, dosed at the right intervals to last 24 hours.

The other possibility is that you are doing too much on the good days, resulting in the bad days where you are forced to rest more and then the next day is better - rinse and repeat. Try keeping a diary and see if there is an association like that.

Being on pred is not a licence to go out and go back to normal life activities - it is managing the inflammation and relieving stiffness and pain but the underlying autoimmune disorder is still active in the background, attacking your body tissues and leaving them, muscles in particular, intolerant of acute exercise. You have a new normal now and you have to learn to live with it, managing your resources to last all day so you don't run out half way

There are some links here that may help YOUget it - because there are two aspects to that!

healthunlocked.com/pmrgcauk......

[itsnickers in reply to PMRpro]

I hadn't thought of over-doing it. All I kept thinking is that my pain is systemic so I am not damaging my joints, that I need to stay moving - until just now reading this! It had never occurred to me that I was causing my bad days but you are RIGHT!

Working during the day takes enough out of me but then I am trying to be 'normal' too. I already have a journal but now I will track my activities as well.

So, is it that by doing too much I am hurting my joints or I am fatiguing myself or fatiguing/aggravating the PMR??

What about exercising? Can I do that as long as I am still allowing restful periods?

[DorsetLady PMRGCAuk volunteer in reply to itsnickers]

As the saying goes - a new normal!

Joints are not affected directly by PMR, but the muscles surrounding and supporting them are........as I say in my info post, if the blood vessels are narrowed by the inflammation caused by your illness, then the blood flow is impeded- hence less oxygen and energy to those muscles.

Fatigue is part and parcel of the illness, by it can also be a side effect of Pred.

Exercise is good, but gentle (Yoga, Pilates, Tai chi, walking - and not repetitive, circuit training type - and your muscles need longer to recover.....so maybe short periods and every other day.

[PMRpro Ambassador in reply to itsnickers]

Depends on the exercise - repetitive or sustained actions aren't good, they make the muscles sore. Walking, aquafit, that sort of not too hectic exercise is a good start - but ALWAYS at your levlel and not so much you hurt next day, if you do it was too much. So it is better to start very small and increase in small bites to find your limit, Then "train" for a while before upping the amount or level again.

[HeronNS in reply to itsnickers]

I bet you will start to feel better once you pace yourself. I have so many times had to tell people I'm not the person they knew before. But it is necessary. If you were one of the people who was always active and also involved in various organizations or such, then it really is time to draw back and learn to say no. Better to keep up a couple of things you really love and take a hiatus from the rest.

Regarding medications. After only a few months and in the absence of any particular symptoms or test results which warrant the use of any of those medications your doctor is pushing you to add, I'd say no to the lot of them. Take your pred, taper slowly and sensibly according to your symptoms, eat healthily, get moderate exercise to keep fit, and lead a less stressful and active life. You'll be fine without the extra chemical burden!

[piglette]

PMR is life changing and we need to change our lives to deal with it! Why are you being offered zillions of prescriptions by your rheumie? Do you have something else bedsides PMR? I just take steroids and vitamin D with calcium.

[PMRpro Ambassador in reply to piglette]

Mmm - but they want you to take AA - surely there were other things to deal with the perceived side effects of pred?

[piglette in reply to PMRpro]

I was just wondering if itsnickers had been offered the whole gamut of drugs, as I am very aware what some doctors are like!!

[PMRpro Ambassador in reply to piglette]

Looks like it!!! You really do wonder if they have shares in the companies

[piglette in reply to PMRpro]

I think there are probably incentives. My brother used to be a drug rep. He said he used to have doctors running after him for the free pen! I think the trips on the Orient Express etc are not allowed any more, but smaller prizes are probably still available.

[PMRpro Ambassador in reply to piglette]

In disguise ...Really miss my post-its and pens ...

[HeronNS in reply to piglette]

Back in the olden days when I was a child my father (a GP) used to get all sorts of trinkets from drug companies. I fell heir to the postcards from all parts of the world, collectible by me for the pictures, although I suppose the stamps are or were considered of more value. Still have them.

[piglette in reply to HeronNS]

My brother when he was a kid used to get the notepads sent to my doctor and sell them at school. My parents were contacted because he was selling pads advertising contraceptives!! My brother probably had not got a clue what they were, he was just interested in the sale! My parents thought it was hilariously funny.

[HeronNS in reply to piglette]

Not a commercial thing but one of the best items we doctors' kids got were the sheets of yellow paper the radiologist brought home. I guess they must have been used to separate new film used for x-rays? There were several of us all around the same age, including the radiologist's older daughter, so we were plentifully suppled with paper for drawing and playing games on.

[piglette in reply to HeronNS]

My father used to bring back food he had tested such as salmon. I remember some pineapple with white spots on it and we complained. His reply was ‘it is OK it has been tested!’

[PMRpro Ambassador in reply to piglette]

They would have had grounds to complain if he'd been selling samples ...

[Lmbjj]

My Dr started me on only 20 mg a day for 4 weeks the decreased amount by 2.5 mg every week . I'm down to 7.5 mg now but the fatigue and pain are coming back. Do you have pain in your feet or legs?

[itsnickers in reply to Lmbjj]

Not in my feet but the pain from my hips and knees radiates down my legs. I was okay until I dropped below 15 mg. Also my hands are now very bad, which I did not have at the beginning of this adventure.

[PMRpro Ambassador in reply to Lmbjj]

That is NOT the way to manage PMR. 2.5mg per MONTH is on the fast side. From 10mg the reduction rate should never be more than 1mg per month. And you stop reducing when you find the dose that just keeps the symptoms stable at the level they were on the starting dose. To do that you reduce slowly and stay at each newy dose for 3 to 4 weeks at least - if symptoms start to return you go back to the previous dose. The only thing they did right was start you on 20mg.

[AtopicGuy]

I too was told to "taper faster, taper faster!" after being diagnosed with PMR just before Covid emerged. I think doctors suspected immediately that immunosuppressants might increase the risk of infection, but didn't want to worry patients by explaining why they wanted the steroids reduced quickly. As it turns out, steroids do increase the risk of severe Covid outcomes by 6.9x, but methotrexate etc. are safe. NSAIDs like Celebrex worked for me at first (reduced the pain but not the 90-minute morning stiffness) but the benefit didn't last and I got repeated sinus infections. NSAIDs can damage the stomach, so protective drugs such as Omeprazole are often prescribed alongside as a precaution. The same applies to Boniva, which reduces calcium loss, a serious side effect of steroids. I chose instead to drink an extra pint of milk a day and take a vitamin D tablet if I couldn't spend enough time outside.

[HeronNS in reply to AtopicGuy]

Lots of doctors have always wanted to rush their patients off pred, the only drug which works for us. They are used to using pred for other conditions which are less open-ended. I imagine the current news about long term immunosuppressants is just going to make more doctors more anxious about us. But really they need to be stressing the things we can do to protect ourselves, rather than potentially causing us to flare and need a higher dose!

[Triumph650]

Welcome to the roller coaster which is our lives at the moment.I get a bad few days when I drop each mg and if I have a lazy day doing nothing.

Me personally the more physical I am the better each day is.

Tomorrow for me starts at 6am with bike ride 6km return to gym where I do an hour on upper body machines.

The rest of the day is garden etc

The bad days I still push myself, I’m not giving in to it.

My wife is a nurse but because she can’t see an obvious injury it’s hard for her to understand

[DorsetLady PMRGCAuk volunteer in reply to Triumph650]

You don’t have to give in....but sometimes you have to accommodate. 😉 no comment on OH🤦🏻‍♀️

[itsnickers in reply to Triumph650]

I agree with you about moving. I find that during the work week when I am running around ever so stiffly (I'm a 4th grade teacher) I feel better faster during the day and of course, I'm not thinking about how badly I feel. I had to laugh about your nurse wife not understanding because there is no obvious injury - I still feel that way! I keep looking at my x-rays, etc. and thinking, "there is nothing there so how can there be anything wrong?" I also keep trying to figure out how to get rid of it! Change my diet, exercise more, clear out all the toxins in the house........ Thanks for your post Triumph650

[Triumph650]

You’re welcome , take care

[itsnickers]

Sounds like you have a wonderful situation. My first Rheum has been terrible. They are not nice, have never asked how I feel, and EVERY time I go in ask me with dripping distain why I am not taking all the meds they want me to. Further, I had a horrific reaction to one med they suggested before the PRED and yet, every time I go in, they ask me why I am not taking that; I have to remind them that I blacked out, and had black/blues covering half my body for over a month. They just reply, "oh. maybe it was a fluke." Also, that med is Not even necessary as it is for pain. I have NEVER asked for a pain med as I don't take them. They have no idea who I am. This was the not so bad stories as the beginning of our relationships trying to get diagnosed was even worse. My 2nd Rheum I just saw last week; he is okay I think. He gives his suggestions but said that he will work with me even if I have other ideas how to treat - I am hopeful that he will be my new one.....