Husband Just Diagnosed with PMR | Arthritis Information
What a Blessing to have just stumbled across this forum. My husband is 71 and just found out he has PMR after about 1 month of symptoms. His dr the end of 1/09 put him on BP medication and we thought it was side effects from that, which I am wondering if could have triggered the PMR. My husband is 20 yrs older than myself and I have seen him through many health problerms, Heart Bypass, Bilateral Knee Replacements, etc. But this time I have never witnessed him suffering such severe and debilitating pain. His quality of life has decreased so much so quickly. His SED rate was 49 2 weeks ago. The dr gave him a shot of Pred in the office and then started him on the pills immediately, 30 mg daily. Like some of you have said, the pain deminished so much within 2 days. He said it hurt just to breathe. He was trying to to decrease the dosage as directed but when he got down to 15mg the pain started to increase. The dr told him to go back to 20mg daily. We are trying so hard to understand PMR but we are so confused and have so many unanswered questiuons. I am trying to find a Rheumatologist for him to see. My husband has always been an extremely active person. He had just signed up for a new dr supervised exercise program at a senior center and continues to fish and hunt.
So much that I have read here on the posts sounds just like my husband. It is the unknown that is so upsetting. It brings me to tears to see him suffer so. I feel so helpless.
Thanks for letting me have the time here on your Forum to post. It is such a relief and so supportive to have found it. I will continue to be on here to read and learn all I can.
I will keep you all in my prayers.
Hi Pinky
You have come to a great place for help. I came here in 2007 shortly after I was finally dxd. A lot of the people that were on with me have either finished and moved on or are very quiet. Mrs. UK is a wealth of information and RDSwede still comes back. I was left to decide my pred dosage depending on how I felt....more if I hurt but taper if I didn't. Tell hubby not to be in a hurry to get down in the pred as so many people thought that by getting down in the pred would chase the PMR away but it doesn't. Pred is there to keep you comfortable and if he can reduce 1 mg or or even 1/2mg at a time that is great. Sometimes the Drs. tell you to reduce 5mg at a time and you go into a flare, that is the time you should take control of the dosage yourself. He will get all the good stuff like jelly belly, camel's hump, and puffy face but who cares as long as you are comfortable and still active. When I was on 20 mg I was on the golf course at 6:30 every morning. You have lots of oomph. One thing else, tell him to keep moving. I did not and had to have pt after for a bad hip.
It took my first Dr. 2 years and still did not have a proper dx. (she said she thought it was weather related) and it took the second Dr. basically one visit before she sent me on to an Internist who dx me on the spot. What I am trying to get to is that it took almost 3 years from start to finish for the poly to burn out, one year on pred. Some are longer and some are less.
There are tons of things that sprout up and if you are unsure or need an answer, just pop in here and someone will answer your questions.
Take good care.
Pat
TeedOff2009-04-26 18:55:04Like your husband, I am male and 71. Pat mentioned I had a tapering regime that I found very good for me. Many others have also commented favourably about it.
I started on 20 mg in June 2005. At first I tapered 2.5 mg every 3-4 weeks. When I got down to 10 mg I tapered 1 mg at a time until I reached 5 mg. Then it took me a year to come below 5 mg. Then I started a new regime where I tapered just 0.6 mg every month or so. I took the new dose one day, the old dose two days and repeated this once more. If you want to drag it out even longer, you can alternate the new dose and the old dose for another week or two after the first week. I think that when you are at a dose below 5 mg, you can take it easy and have a better quality of life rather than rushing to get off pred. The side effects are very low, it seems.
At the end I had tablets of 2.5 mg that I cut into four parts - therefore each was about 0.6 mg.
Since the middle of December 2008 I am free from pred and feel fine.
Good luck
Ragnar
Pinky, Don't hurry the decrease in dosage for your husband. You can probably look forward to two or three years of pred and he can lead a pretty normal life as long as you're patient and cut back the dosage very gradually. 30mg seems a bit high for starters but whatever works for him is the real criteria. Think percentage of dose when he decreases. As the dose gets smaller, the decrease in mg must be smaller too. From my own experience, I thnk that men don't have side complications nearly as bad as the ladies. I didn't gain weight or have any noticeable puffiness. And we went on a European river cruise with no problems.
Patience is the keyword overall. PMR won't go away fast, so don't try big reductions in pred. And be optimistic.
Hi Pinky
I agree with the others - he shouldn't try and get off too quickly; being comfortable enough to be active is a far better proposition. I've had it 2 and a half year, got a very quick diagnosis and started on 40mg, magic results! Dropped to 20mg after 3 days and the pain came back. My Dr told me to go back up to 40mg, and then after about 4 days drop to 30mg, then 25mg and then 20mg. This time it was ok, and the pain didn't come back, and I gradually (using the type of regime that Ragnar describes) to down to 1mg after 18 months. That was too low, and I had to go back up to 2mg.. Stayed on that for 12months because it never felt right to drop. Tried a drop a couple of months ago, and have had to go up to 3mg as the pain came back again.
I think what I have learnt is that it is better for me to have the pain and stiffness under control so that I can be active and go for walks, than force myself to continue with a lower dose of prednisolone which allows the pain, stiffness and tiredness to come back. My Drs advice has always been to keep on top of the inflammation, and that means treating the symptoms, rather than following the blood tests.
It's awful and scary when it starts and this forum was invaluable as between us we have a wealth of experience of what it feels like to live with.
best wishes
Margaret
Good Evening. I want to Thank everyone who responded to my posting yesterday about my husband. It really means a lot that there are people out there who care and are supportive and so informative along this journey trying to deal with and understand PMR. One thing I did forget to ask, did anyone develop a cough with the PMR? He has had it since before he went on the Pred so I know it is not a side effect from that. I have tried searching the web and just cannot find anything on that. He goes back to his dr in another week. I will make sure I question him.
My deepest thanks again for all the info and everyone have a great evening. Talk to you soon.
Hi Pinky,
No cough here but be sure to make a note and question the Dr. You never know what can creep up on you. Keep an eye on it.
Pat
Before diagnosis I had a dry cough that wouldn´t stop. It was the cough that made me go to a doctor and after about two months of "trial and error", I was diagnosed with pmr and GCA. I wasn´t told clearly that I had GCA but was told after 1 ½ years my regular doctor told me. I understand that my first dose of 20 mg probably was too low for a person with GCA. Two weeks ago I went to an eye doctor and checked that my eyes were OK, so I had no problems with the GCA really.
I think my cough ended before I started taking Pred in Hune 2005 or else it stopped when I started on Pred
Ragnar
Pinky, you have found a great place for answers. I learned more here and on the web then from my dr. Listen to Ragnar, don't try and reduce to fast. it will come back and sometimes worse. Good luck. Geri
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