Husband has PMR | Arthritis Information

 

Hi Everyone;  

I am new to this site and looking for some advice.  My husband was diagnosed last November, after a week in the hospital for what they thought was an infection in his knee.  We still don't know if in fact, there ever was a true infection.  Hubby is down to 7mgs of prednisone a day, but has alot of discomfort at night and early in the am.  We have just started to split his dose to 5mgs in the am and 2mgs at night...to take the edge off.  He refuses to take tylenol for the muscle discomfort unless he's at his witts end.  I am tired of seeing him go thru this, and feel helpless.  We have shed more tears over this than anything in our marriage.  To give you a better idea of things...he started at 20mgs a day, and he's also an insulin dependant diabetic on an insulin pump.  Not fun when on you have to take steroids....   Any info, tips or advice is welcome!!   PS--he did start his symptoms about 4 days after his yearly flu shot.  Thanks!

pmrwife-

Your husband is fortunate to have such a concerned wife! Hang in there!

I sure hope he has a good Rheumatologist.  Being diabetic the prednisone is more of a risk. Sounds like he needs some help with pain management.  This is where a good rheumatologist is needed.

Heat helps my pain and rest- stretching and some walking each day are important.

Good luck-

Karen

I'm so sorry and so know what it is like.
Prednisone at night will keep you awake as it usually wires you to some degree.

Your Doctor should be giving Vicoden or something that strength for pain, as tylenol is kids stuff at this point.

Do get firm with your Doc. about the pain. He should know.

A Rheumatologist. That is who usually handles this.

Don't fool with the coming down on the Pred. by yourself as that can get serious.

With right med. amounts this can be handled.

Best Wishes,
KewaneeKewanee39194.7962037037We are following the guidelines established by the rheumy for the decrease in prednisone, and got his ok to take a partial dose at night.  It didn't dawn on me about the "awake factor" with taking it at night.  Thanks for that.  The hard part for me is that hubby just won't even take tylenol....until he's at a point where he can't stand it.  I have tried to explain the benefit of taking it, rather than suffering...   The rheumy has asked him to take it 3x a day...to see how he does with the stiffness.  I guess I'm just frustrated, as hubby won't even follow the rheumy's guidelines....and I hate seeing him stiff.   As far as taking something like Vicodin...forget it!  He's a stubborn man, and his own stubborness is what is making him uncomfortable.  I just hate seeing him in any kind of "pain".   Thank you to everyone who took the time to respond...I think I just needed to vent and see if anyone had any new suggestions.  Thanks again.

Welcome to the forum.  I guess there's not much you can do if your husband doesn't want to take pain killers.  For me, Tylenol did nothing.  Prednisone usually does the trick for me (I'm currently at 12, about to reduce to 11 mg/day - was as low as 4 mg/day last fall, but had a relapse in another "location") but any time I've needed additional pain relief I'll take either Ibuprofen (e.g. Advil) or Naproxen (Alleve).

I found that the stiffness improved as I moved around and got on with my day.

Best of luck

pmrwife,
     so sorry to hear what your husband is going through, i was taking pred at night and it was keeping me awake, Dr. told me to take full dose in the morning.
      i also take darvocet and without that i would not be able to do a thing, and i would not be able to stand the pain.
      i hope things get better for your husband lots of luck
Georgiana from Connecticut
pmrwife,

I never took my prednisone does at night - always in the morning. And for me, it really helped me to sleep, because I wasn'thurting so much any more. I know how your husband feels, not wanting to take the medicine. I am that way, too, but have found out the hard way that if you only take it when you in dire straits, it takes that much more medication to get things under control. You want to stay ahead of the pain, as they say, and not let the pain get out of hand. I had kidney stones 7 1/2 months through my second pregnancy. The dr. put me on dmereol, to be taken at the slightest twinge of pain. After 2 weeks of that, being housebound because the demerol made me so loopy that I didn't dare drive or even go for a walk, and worrying about what it would do to the baby, I started to take Tylenol instead. Well, the pain got out of hand, and I ended up in the hospital on a morphine drip. So - do not let the pain get out of hand!!

I agree with Ruth about Tylenol not helping for PMR pain (only prednisone did it for me), and with Kewanee about letting your dr. know exactly how much pain you're in. I always tended to minimize the pain until I saw the pictures they use for children to describe the pain (you know the one with the faces on it?). I found that instead of a 2-4, I was really experiencing 5-7.

Thanks so much ladies.  I really do appreciate the fact that you all took the time to answer and post.  Reni..your mention of the pain scale makes me really think about it....I may have to get a copy of one and see what he says!!  hhmmm   Good thought!!  He's 50yrs old, diabetic...and trying to be the brave guy, by taking the meds only when absolutely necessary.  He is doing much, much better than when he was first experiencing PMR, before being diagnosed.  His prednisone is down to less that half of what he started on. 

At this point, hopefully, he will try to take better care of himself, (ie. following MD orders) so we can both relax.  Thank God we finally at least have a diagnosis...that alone took 5 doctors before being referred to the rheumy.  When we had the diagnosis, we both shed tears...to know at least there was a name for what he had and that it could be treated.  Even better, that some day it may even go away!!   Thanks again for everything!

Michele

So sorry to hear your husband has PMR but it does go away as I am living proof. (yes it can come back as also i am living proofbut I digress....)

I have found 2 aleves at night  helped  (with some food and a whole glass of water) .On the nights I would take that I would feel much better in the morning)   

Thanks everyone!  I am going to print this out and let him read it...maybe, just maybe he will try one of the suggestions and feel a little better soon!   Thank you again to you all.

pmrwife,

I am from Sweden, male and 69. I have beeen on prednisone since June 2005 and now I take 5 mg a day - have done that for a year. I tried to reduce but had to go back up to 5 mg several times. I was told by the doctor at the big hospital where they finally decided I had PMR, that if there is an illness you would choose, PMR is the one because it goes away. When reading what some go through, I am not sure if that was the right thing to say. When I started I was given a prescription for Imovane (active ingredient zopiclone) in case I couldnīt sleep at night. I was told that it is almost as being "high" when you have a high dosage with prednisone. In the beginning I took half a tablet of Imovane- zopiclone in order to sleep easier. Now I seldom take half a tablet at the reduced prednisone dosage. I am lucky not to have had any pain during my time with PMR. I was also given prescriptions for Calcichew D3 (calcium against osteoroposis and with vitamin D) and Omeprazole so I wouldnīt get ulcer (I havenīt taken it after last summer when my face got red after having been in the sun, and the doctor told me that if I donīt have any problem with my stomache, I could quit). I have always taken the full dosage of prednisone in the morning. I think that if you split and take some prednisone at night, it will keeep you from falling asleep. Give my best to your hubby. I hope he will adjust to the situation and take the medicine required. I am a "friend" of prednisone, because it has helped me even if I look forward to the time I can quit prednisone. A friend of mine, who is male and around 71 has just quit being on prednisone, so there is hope if you stick to the "rules". Donīt taper too fast!

Greetings to your hubby from West Sweden

Ragnar

Ragnar,

I am still curious as to how they diagnosed PMR if you didn't have any pain? Was your sed rate really high at the beginning, and did they do a temporal artery biopsy? Just wondering. How fortunate, that you haven't had the awful pain.

Reni

Hi Reni,

Yes, I had a TA biopsy and I was told I had TA and PMR. The sed rate was also quite high. It took two months to get the final diagnose, probably bnecause I didnīt have any pain. Indeed I feel lucky when reading how bad the situation is for most of you guys on this board. (It is now 6:50 PM in Sweden and we have a lovely evening with sun and very warm weather with 19 C (66 F).

Ragnar

Ragnar,

Thanks for the quick reply, and glad you are doing so well with your PMR/TA.It sounds lovely there in Sweden. We have sunshine today, too, and it is supposed to get to the 70's F this weekend here in Aurora, Oregon. The rhodoendrons, azaleas, irises and so many other flowers are blooming now. It is so nice to go for a walk and see all the pretty yards. We could still possible get a frost before the end of May, so it is hard to wait to plant the tomato seedlings out in the garden. I do have several things growing in my raised beds already. A fun time of year.

Reni

Ragnar.....curious to know what your symptoms were before your diagnoses? Headache? Jaw pain? vision problems? What made you go to the doctor?

Tak se mucke! (isnpt that thanks in swedish?)

It started when I was on a weekīs trip abroad in the beginning of April 2005. I had fatigue and had to take it easy and also got a strange cough. After coming home, the cough continued (what we called dry cough in Sweden) which was very irritating. I went to the GP after some week and he couldnīt tell what it was. I had several blood checks, X rays for the heart and lung, ultra sound for the liver and maybe also some more checks like that. The sed rate was high. I was sent to the main hospitakl to specialists in medicine who took more blood tests. In June 20th (approximately) I had a biopsy in my left temple and that was the final thing for the diagnose - PMR and Temporal Arteritis. I guess the lack of pain was one thing that made it hard to diagnose. We live in a hilly area and sometimes it is very hard to walk uphill. At the moment, we take care of a male Golden retriever and it is nice that he gets me to go out and walk a lot and he really pulls me uphill many times.

You are quite right about the expression thank you very much in Swedish. The correct spelling is Tack så mycket!

Ragnar

so you did not have any standard symptoms for TA and PMR beside the high sedrate. Good docs there in Sweden! Than again....They say that most people that get this are from "Northern European" decent. Guess it is a well known desease there!

Ahhhhhhh............ golden retriever to the rescue once again! My dogs got me tru this hell aswell! Go Doggies!! Woof!! 

Well Arteritis is often connected to PMR isn't it ? Isn't GCA and TA related? GCA can present with redness and pain in the temple area....which I thought was temporal arteritis. It can go with arthritis as well. And that with the sed rate probably led to a diagnosis. Who knows maybe one day you would have awoke in pain eventually.

Sorry to hear about the Arteritis.kEWANEE...I THINK TA AND GCA ARE THE SAME THING JUST  A DIFFERENT TERM? marianne195239204.4999884259Hey Marianne,
I THINK YOU'RE RIGHT! lol. So funny.

Hope your day is a good one.

~Kewanee

Hi Everyone;

Hubby used my laptop last night and I suggested he check out this site, which of course is saved as a favorite.  He read alot of the posts, including this one.  He was surprised at the number of people suffering with PMR, and said he was glad he took the time to read the posts.  I'm hoping this means he will "do as the doctor ordered" a little more readily, without waiting till he's in a ton of discomfort.  I have only been trying to get him to check out this site since I found it a couple of months ago!  Slow learner!! 

Michele

I think it is the same thing as men refusing to ask for directions!

Can't live with them can't live without them

must be hard for people that have no significant other to help while going tru this..(like Georgina) 
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