Officially PMR

Got a call from my rheumy today that it's now officially official - I have PMR.   After discovering this board, I was certain of the diagnosis weeks ago.   I guess I should be thankful that she is very thorough and ran tests that ruled out RA, hepatitis, STDs and cancer.  

I was very resistant to taking Pred due to severe side effects I experienced 30 years ago (for allergies) until she could absolutely tell me that it was def PMR.  I've been on 6MG oral after receiving localized injections on March 4.  I hate the effects of even that low dose.  I feel puffy and swollen and agitated and like I want to cry all the tIme.  I sleep an average of 3-4 fitful restless hours per night.  

Doc insists I have to start 10MG beginning tomorrow because of the high WBC, sed rate and high CRP and the inflammation that shows clearly on the MRI on my shoulder.   I realize this is still a comparatively low dose, but I'm feeling really down because I feel the more oral Pred that I'm required to take, the more I will "need".  

I walked 6.39 miles today on a beautiful trail with waterfalls and wildlife.  I took all last week off work and rested and slept and exercised and tried to de-stress.  

I keep thinking I am too young for this awful crap and this d!%# disorder should just leave us all alone and go away.  

I only read stories of people who are suffering terribly with PMR/GCA.  Sitting here at 10:00 PM tonight (my own pity party) I feel quite miserable.

Does anyone ever get over this and get back to 'normal'? I cannot imagine feeling like this for many more months or years to come.  

 

PS - rheumy says due to my previous history, she is trying to keep me at the lowest possible dose and she will have to put me on methotrexate along with Pred if I can't manage on the 10MG of Pred alone.  Does anyone else take the combo of both drugs? 

Hi Maggi

I can feel in your writing how low you feel at the moment. I don't have PMR - I have GCA, so can't help you specifically.

However having just received a definite diagnosis this week after 18 years of poor health and attacks/flareups, I can understand how you're feeling.

I too, don't tolerate Prednisolone very well. I've been on 60mg a day since last July and have everyside effect possible - some of them very distressing & frightening.

People do "get over" PMR & GCA - it's along journey and you'll need to destress your life and pace yourself each day.

Use this forum when things get too much for you - you'll get a lot of support.

Does your primary carer/ rheumy know about how you're feeling? and about the problems you are afraid of happening again with Pred?

Try not to keep these things from them - your rheumy sounds OK.

Hang on in there & others will contact you.

Take care of yourself

Jean

 

Maggi, I've only known that I had PMR since last September & I know the mix of emotions you're feeling. First anger, then sadness, then grief, then as you say, having my pity parties for myself on days it got to be too much. It's taking me a while too, but I'm starting to realize that even though I hate my "new normal", I can still find ways to have fun. No, it's not the same as all the hikes, kayaking, swimming, etc. that were my life before PMR, but it's made me open my mind to the other things in life I haven't got around trying yet. Took a meditation class last week. Definitely a challenge for someone who never sits still, but I figured I could use some help learning how to quiet my mind through all this. I still suck at sitting still, but I'm getting a little better and the meditating does help. Hang in there!

Hi Maggi -

Yes I do and I am sure that there must be quite a few of us.

I have GCA  and started out only taking prednisolone - after about 6 months I was started on methotrexate as well.

I also have osteoporosis and I assume that my rheumy is concerned that I need to get the pred. level down - I have been taking it for 2,5 years now and it has taken me this long to get down to 10 mg.

At my last apt. he said that I should start injecting my mtx instead of taking it orally.

I was worried that any side effects might be worse but the nurse who instructed me in my first attempts at self injecting assured me that if I could cope with oral mtx then I would have fewer side effects as it would go directly into the system - bypassing the stomach. Apparently some people get stomach problems.

I have only had 2 doses but as of yet I haven't encountered any problems.

There are questions as to whether mtx does any good at all, I don't know either way - all I do know is I want to get off prednisolone asap (my GCA  is taking its own sweet time burning out) so that I can get "me" back again - if methotrexate helps me do that I must just buckle down and get on with it.

Once I get over the "jabbing a needle into myself" part, taking the mtx by injection also has the great side effect of being free!

I get a supply of ready dosed one time syringes from the hospital enough to last until my next apt. with the rheumy.

Now that is a side effect that I approve of!!

 

Hi maggigrace, first of all as you say your Dr has ruled everything else out and all that remains is PMR. When I was diagnosed with PMR I cried and cried, thinking I have this condition that may be with me for years and years and in some cases it never goes away it just hangs around like a bad smell. Then the idea I was to be on medication and what a medication! Steriods!!! It took a long long time but I have now come to terms with this condition and see prednisolone as one of my best friends. I haven't got cancer or another terminal condition and if any of us are too get an autoimmune condition then PMR is definately the nicest to get! I sound very flippant yes, but we have to be strong because this condition will be with us for the long haul and I like life and I like living so PMR and or GCA has to be accommodated for within our new lives. It's a bummer but there it is. 

But I don't think your theory is right about the more pred you take the more you'll need because pred is not an addictive drug. I suppose in theory we could become addicted to why we take it, and by that I mean when pred works well and most and in some cases all the PMR pain is under control we feel secure and become afraid to taper because if we time it wrong or take too little then all our insecurities and fears return along with the pain. But we all learn that we have to take the risk, if I can call it that, and reduce. So no you will never need more because if addiction.

Your sleeping will get better.

your puffy ness will get better.

i feel I'm too young too, 54 now, 52 when diagnosed, but I've got it nonetheless.

you are feeling so low because currently you are still at the very early stages of your treatment and until you take a dose, however that's administered, that is high enough to control the inflammation that in turn causes the pain then you will feel like this. Pain is Corrosive, it eats away at your mind, so as I say when the pain is under control you in turn will feel more in control. It was many months until I accepted this condition, but once you accept it I will promise you a whole weight will be lifted from you, you don't ever forget that you have this condition but believe me you will feel free because all the fear, anxiousness, pity, that you feel each day is a heavy burden too and can be as corrosive as pain.

most of us do recover from this condition, it will not kill us. Many of us do get back to normal, yes after many years but once again many of the activities that I no longer can do have been taken over by new activities that I have taken up or are resuming once again.

you say that you walked over 6 miles today. Well, I couldn't walk as many as 6 miles presently. Pre PMR 10 miles but not right now. About 4 is my limit but like you I live near loads of coastal walks, tracks, wildlife sites, beautiful nature reserves, (I live in Cornwall), and when I go on these walks which is about once a week, I look around me and thank god I'm alive.

things will get better, believe me.

all the best, christina 

 

Yes, people do get over PMR and GCA and back to "normal", although since you are older and likely to be less fit by the time it happens it may not be like you felt immediately pre PMR. Remember you are "meeting" a skewed population here - the people who have problems and/or have only recently been diagnosed. Most people who don't have problems aren't here - they don't need the forum. MrsO is over her GCA and I am pretty much over my PMR - we're still here because it is our "work" in the voluntary sector, so to speak. She runs a support group in the south of England and I do this and work with a research group in an expert patient capacity.

About a quarter are over it and off pred in about 2 years, sometimes less, half take up to 4 to 6 years and the rest are longer. I'm in the final quarter after 10 years since the first symptoms appeared. I'm on 4mg pred but feel pretty much fine. I've given up a few things but I probably would have given some of them up by now anyway. In the meantime I've had major flares and been on different sorts of pred, some OK, one definitely not OK and the current one is really good for me. I put on weight - I have lost it all and a bit more and am just about back to my pre-PMR weight (I put on a lot with PMR itself because of finding it difficult to exercise because of no treatment for 5 years because it wasn't recognised, I was only 51 when it first appeared).

Keeping carbs to a minimum will help avoid the weight gain and the diabetes risk. Once you have the inflammation under control and learn to pace yourself you will feel much better. You will learn to manage your life to accommodate PMR - and believe me, it is far easier on pred than without it! Given the choice of being chubby or being in constant pain, for me there was no choice. I found using other therpies made life more comfortable - in particular I very occasionally used osteopathy (chiropractic but not the woo variety with supplements and weekly visits!) and, above all, Bowen therapy. I did Pilates for that first 5 years - that and Bowen kept me upright with no pred until it went absolutely haywire and I was finally diagnosed and given pred - 15mg achieved a miracle in 6 hours. Some of the pain you have can be improved by targeted therapy - cortisone shots and Bowen in particular - and that probably allows a lower oral dose.

An antiinflammatory diet - adding things like oily fish, turmeric, garlic rather than omitting things seems to help some people. I've tried gluten-free, alcohol-free, nightshade veggie-free - none made the slightest difference. Very low carb HAS allowed me to lose 40 lbs in weight even though I was still on pred. It also helps with fluid retention which pred does tend to cause.

But if you are able to walk over 6 miles - you aren't doing badly. I had a year when I couldn't walk more than a few hundred yards and that was on crutches and even before that a couple of miles was about the limit. No idea how far I can walk now - for a few hours at my own pace I suppose. 

I still believe the most important aspect is acceptance - that isn't giving in, it is seeing you are where you are and not fighting it. That uses up so much energy that you can use far more productively elsewhere. Yes, we all feel sad at what isn't possible at the moment - but the people who get through this best learn to live with it and find new things to do. One lady took up making cards in the long night hours when she couldn't sleep - she has raised a lot of money for her animal charity and for PMRGCAUK NE as a result. She had been doing youth work, walking, abseiling and so on until PMR hit. Others of us work with the charity in various ways and most of us had been active and fit people beforehand. 

I'll leave it to others to tell you their experiences of mtx - there is no evidence it helps reduce pred reliably or significantly in PMR. PMR can often be confused with late onset RA, however careful the diagnostic procedure, because there are NO 100% sure differences - maybe the people for whom mtx works well have that or both. As a "steroid sparer" it is thought to change the way your body metabolises the pred so that a smaller dose achieves the same effect. Some people have used it and it appeared to work at first as they reduced their dose only for them to have a big flare later.

You sound to be doing not too badly at the 6mg dose but your doctor appears to want to get the inflammation under control - if you use a higher dose to do that and then reduce carefully (ie in small steps) back to 6mg you may get away with it - 10mg is commonly plenty for many of us as the maintenance dose and by reducing very slowly most people who have tried the "dead slow and nearly stop" reduction plan have got well below it. The biggest mistake you can make is to try to rush reducing and going in big steps - that way lies trouble and you get into a yoyo pattern with the dose.

Loads of links to info here (sorry if I've already given it but better once too much than once too few):

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and the slow slow reduction is there too.

Yes eventually you do get back to almost . t as you were .It

Yes eventually you do get back to almost . t as you were .It

it took two years for me to come off Pred. However I now have Rheumatism in my hands hence the previous half a message.At the beginning of Pmr my hands were fine but in bad pain now especially in thumbs.I am also having ankle and groin stiffness. I feel not related to Pmr but very tempted to start them again, however as the day progresses it goes away. now seeing Hand man on 20th.Still playing bowls but hubby taken over many house jobs haha. Stick with it all you will be well again

Good luck.

I had PMR for 5 years and managed well. Once the Pred had kicked in and I eventually tapered down to 2.5mg, I rarely noticed I had it. I worked fulltime in a busy job and was always busy in my free time.

I've now got GCA, but that's another story and just unfortunate. It only happens to a small percentage of PMR sufferers.

It's a horrible feeling to have the diagnosis confirmed, but it certainly doesn't have to mean the end of doing what you do now.

I only searched out this site when diagnosed with GCA.

MaggieGrace,   I hear you...  Listen to these folks they'll give you support.  I've been " under attack" that's what it feels like for 9 months!  I think back to how great it used to feel to walk and exercise....  Be careful ..I was feeling pretty good and thought it would be good to walk on T- mill. It was terrible the next day.   Can't measure by how you feel... Just go easy...

hang in there...  Judy

I want to thank you all for the words of encouragement and great wisdom each of you has shared.  I think the greatest thing is that I am clearly still trying to float my boat down the river of denial and live each day as though nothing is really wrong. I have had a few other health issues over my life (degenerative and herniated discs at 33 and 53 that both resulted in spinal fusions) but worked through the pain and surgeries with only minimum meds and got myself back to work in a short time.  I had an abdominal hysterectomy when I was only 26 and was back at work full-time in only 2 weeks.  I gave birth to two 8.5lb babies without so much as a Tylenol. So  I've always considered myself to be a bit of a "just power through it" kind of gal,

I've never been an athlete but I've always enjoyed walking and hiking and nothing has ever totally kicked my butt like this PMR.   I realize it could be soooo much worse and I am truly very fortunate given each of your shared stories.  You are each and every one in my prayers. 

Going back to my often very stressful job on Monday after taking this past week off.   My supervisor is being very understanding for now, but I suspect if I am not able to "keep up" with the team that their understanding level may become short-lived.  My close colleagues that know about my diagnosis have said on more than one occasion "But you don't look ill."   Perhaps I should take a photo of my blubbering puffy-faced dark circles under my eyes as I look now and show it to them next time they comment!

 ;-)

My job is the source of health benefits and primary income for my husband and me.  To lose that would be quite difficult, so I suppose that is another worry in my head that has made all this seem even worse.  

Thank you you all for the kind responses.  I have taken every word to heart and will work to pull myself together and find new ways to cope.  I am turning 60 this fall and and looking for ways to possibly retire a bit earlier than I had planned.  I feel as though I've met a group of trusted friends and I am thankful to have you as a resource.  Blessings to each of you for a pain-free day.  

Thanks, MaggiGrace,  I'm grateful for your honesty and thoughtfulness and your strength.  Judy

You sound so much like me. I was just diagnosed last Sept. and am turning 60 this fall. I posted for the first time a couple of days & chronicled my journey with PMR so far. Take a look at my post (My PMR Journey) to see our similarities, from spinal fusions to hysterectomies. I had to retire from my career as a dental hygienist as a result of all of this, mostly because of my 4th spinal surgery, but the PMR kicked in shortly after my surgery and I spent the better part of last year trying to figure out what was happening to me. I'm still dealing with the grief caused by losing a career I still loved, losing my active lifestyle, and losing all the social life I had which was hiking, biking, kayaking, etc. with my friends. It was a lot to lose in one year, but I refuse to let this PMR get me. I lost my younger sister to MS and I watched what she went through for over 20 yrs with that nasty autoimmune disease and I'm feeling pretty thankful that I "just" have PMR. She never gave up, and my mother cared for her for years and never gave up hope either. When I got my diagnosis & I decided that if Janis never gave up, I wouldn't either. I had a necklace made that says, "Never, Never, Never Give Up". I had a charm made with the stone out of my sister's birthstone ring (we shared a birthday & our birthstone), and the diamond out of my mom's wedding ring, and this charm hangs on my necklace. I wear my necklace every day, & I feel the power of my mom and sister and I pulling me through this. It gives me faith. Have faith that you'll get through this too. Feel free to vent to me anytime--I totally understand!!!

Hello maggigrace, you said it - coming to terms with this invisible condition  that nobody understands except fellow sufferers is hard, very hard. You say that your supervisor is being very supportive, at the moment. Why don't you print off some PMR details, the details on this site, NHS site and other sites tell the whole story very clearly of this invisible condition. Hopefully she'll read them and hopefully fully understand that this condition is no walk in the park.

it is important that you know that even if you do work and you love your job, stress is pmr's best friend. It loves it when you are blue, stressed and anxious because it can sneak in and just when you thought all was ok (especially around the tapering period) can, only can cause a flare. So make every effort to keep stress at bay. Many sufferers with this condition on this site speak about being under intensive stress for awhile and then coming down with PMR, so just be aware.

i don't know what your rheumatologist is like but tapering the preds is a very exact art. Look up the Bristol PMR plan, I was on that plan until 10mgs. My rheumatologist had me on 10mgs for 6 months. Then follow Eileen's go slow and almost stop tapering regime. I follow it sort of and it works very well. The only difference is I only ever reduce by .5mg and not 1mg at a time. Also never reduce if you are feeling unwell, eg, cold or cough or your body is under extreme stress, remember PMR loves stress whether it's mental or physical.

it is hard, very hard coming to terms with this condition. It didn't happen over night with me, but one day I woke up in the morning and I was so tired of being scared, I was so tired of living in fear of what might happen, and from that moment I just told myself that I was boss again, I was not going to die and now I very rarely think about the damage either the PMR or the preds are doing and I just live my life, and I'm so happy. Hopefully you will experience something similar soon. Keep in touch with us. Regards, christina 

Vickie, I thought you were going to supply me with a laugh a minute. I've just read about your necklace, how and why it was made and the daily strength it gives you. I'm in floods of tears. That is a very sad but uplifting story. Regards, christina 

Okay, Christina, if you want your laugh for the morning, I just saw a picture of a golden retriever (I have a crazy one), and the caption was "It is better to have eaten something and thrown it up and then eaten it again, than to never have eaten it at all." Pretty sure this is my dog's motto!!

That's better!! Have a great day. Regards christina 

Yes MaggiGrace the combination of the illness and the pred can cause all sorts of reactions periods of depression and overall malaise.Yesterday all I wanted to do was cry,had no idea why but it has passed and today I feel just off, so you see you are not alone.There are many good preople on this site who will give you support and advice.Most importantly we understand what you are going through lean on us we are there for you. You are not alone.