Feeling Miserable

Hello, Fran  I haven't posted for a long time. I was diognosed 1 1/2 yrs ago with PMR and started on 20 mg Pred. It worked wonderfully.  After 5 months I developed severe headaches and jaw pain. Rheumy nor PCP took it seriously, as labs always read within range. Rheumy finally realized it was GCA and increases Pred to 60 mg. I have since reduced to 5 mg, rather quickly, but doing okay. She added methotrexate to help. I developed any and every side effect associated with Pred. Need back surgery, not from PMR or Pred.... Haven't been able to do my normal walking or dance for one year. YOU ARE NOT ALONE IN THIS HORRID JOURNEY. HANG IN THERE 

Hi Fran,

I feel your pain and suffering, I really do. The first year was the worst, you are so sick with both PMR and the treatment you feel like it's never going to end.

But it will get better as you learn what you can and can't do, what you should and shouldn't take. You will also adjust your midset a little bit and get some sort of acceptance.

I'm only 53 (diagnosed at 51), and have the beginnings of cataracts from taking pred. I will be getting mine done as soon as they start effecting my daily life - I will welcome it!

Lawd, if we could all be as lucky as your friend!! I was completely debilitated by it. Couldn't even walk at times. Had to give up riding my motorbike, renovating my house and my 'life'.  

I've adjusted, and I"m slowly getting better. It will happen for you too. I promise. :-)

Sorry that you are having such issues, all very difficult to deal with. In relation to Carpel Tunnel syndrome, be very careful about what your physio gets you to do! In my experience of having it in both hands for 9 and 6 years, no exercise really helped as essentially it's the nerves going to your fingers being trapped under a band of muscle at your wrist, so it's that muscle that needs to be loosened and I'm not sure how that can be done except with an operation! I held off on having an operation for so long and eventually just bit the bullet and once I had one done pretty much raced back to have the other hand done and have never looked back. It's difficult for a few wks of healing and to be honest I would say needs 10 - 12 wks to heal completely but honestly, not a tingle or ounce of pain since! Just thought I'd relay just incase you are thinking about going down that road, I highly recommend it, it gets rid of the issue for once and for all! Good luck with everything!

Not only is it rare - I suspect she may not be remembering particularly accurately! I do know someone who has a male friend who tells her he did this that and the next thing and had no side effects. His wife tells a VERY different story however!

Carpal tunnel syndrome is commonly found alongside PMR I'm afraid. One sort of cataract is also a side effect of pred but pred probably also speeds up the formation of the usual sort. However - they are easily dealt with these days and they don't recur once you have the artificial lens implanted.

The tiredness is a part of the autoimmune part of PMR - PMR is just the name given to a particular set of symptoms which can be due to a number of reasons. In our case it is an autoimmune disorder that causes our immune system to attack our body as being "foreign" by mistake. This causes tissue damage, inflammation, swelling and pain. Pred reduces the inflammation - and so the pain and stiffness. It cures nothing, just manages the symptoms until the autoimmune bit burns out and goes into remission - which for 75% of patients it does within about 2 to 6 years. The fatigue you have to manage by pacing - and there is a useful article here:

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

with a couple of links. The second one is particulalry good, not written for PMR patients but just as applicable for us as for ME/CFS.

I've had PMR for over 12 years - as long as I take the right dose of pred (i.e. enough to manage the symptoms) I think I am pretty much the person I was before. I get tired if I'm stupid and do too much, there are some things I struggle with but you learn to manage around the bad bits. This summer I attended a rheumatology meeting in Canada for a week, came home for 3 weeks and went back for a 2-week tour of western Canada (one week bus, one week cruise) followed by a week near Vancouver and then another meeting in Chicago. Then we set off for a 4-week trip to the UK involving driving just over 3000 miles - and I did almost all of it. Finally I'm having a restful holiday on the shores of the Italian lakes with our campervan. 

Now I haven't said this to "show off" or insinuate everyone can manage to do the same. I didn't manage it all happily by simply barging ahead and ignoring my limitations. I requested airport assistance for the long trip - after discovering on the way back from the first trip that Munich airport was a bit bigger than I'd thought! That made a massive difference. I don't walk up stairs when there is a lift - if I know there is a lot more to do. At home I always use the stairs to our 2nd floor flat. I pick my battles - I do what MUST be done, then what would be good - or I want to do. You can leave dust for a day or two. You don't HAVE to iron everything. There are ways to make many tasks easier and sharing the heavy jobs with family, your partner or a cleaner can make a big difference to how you feel at the end of the week.

This is something for the long haul, it isn't something that will disappear in a few months. So you might as well look for longterm solutions from the start. Know your limits and don't exceed them - and you will feel a lot better overall.