Relapse, Horrible Relapse
Posted , 10 users are following.
Hi all--I showed up here a mere 2 month ago. I am a 63 yo woman and I have Secondary Progressive Multiple Sclerosis, and in June was diagnosed with PMR and GCA.
At the time I was diagnosed I was not in horrible condition, I had shoulder stiffness, fierce fatigue and ugly attitude. My PCP sent me to a rheum who she said "this is the guy that will get you through this."
Never has a statement been uttered that was more off base than hers. I was started on 60 MG Prednisone for the GCA, for one week. Then the rheum started tapering: 60 to 40 for 2 weeks; 40 to 30 for 2 weeks; 30 to 20 for I don't know how long.
As he was tapering, I was educating myself here about proper taper. And, I asked multiple times for a slower taper, all to know avail. He continued to say "do as I instruct." Stupid me, I did. All the while I was sending him notes and calling saying "something is very wrong."
3 weeks ago I went in for a regular appointment with fierce hip, glute, upper thigh and lower back pain. Worse pain than I've ever know, and I know pain. He ran bloodwork and my number were within range, but were trending up. I was at 30 mg, he dropped me to twenty. His statement "Your numbers are within range."
And that's when I saw the light. I was in a screaming loud relapse. I immediately put myself on 60 mg/day and was able to get an appointment with the Rheumatology group at Massachusetts General Hospital. I will be there this coming Thursday.
I am in so much pain, it has made me cry. One time it made me vomit. It feels as if every muscle from my knees to my lower back have been strained, pulled, damaged. I can barely walk, and that's only with a walker. I am in pain management for my MS and that doctor has prescribed a Butrans pain patch to see if he can at least quiet any MS pain that may be in the background. I have not gotten that yet, and probably won't try it until I see the new Rheum. I want to show up in the horrid condition I am in right now.
Two months with this clown and look what he has done to me. I feel as if I will never be the same. I feel as if I am losing it. I've been on 60 mg/day for 4 days and blessed relief has not yet arrived.
Please share with me your experiences with relapses. I need support, I need help. I am losing it bit by bit. Thank God for my husband, pets and knitting, they are what are keeping me going.
0 likes, 15 replies
Guest
Posted
Hi all again, I forgot to add that a the Rheum was ignoring my pleas that something was wrong, I went ahead and had my CRP and Sed done. The numbers were higher than when I was diagnosed.
CRP 34
SED 76
I sent HIM the bloodwork results and his nurse replied they were sorry I was not feeling well. WHAT? You people did this to me in 2 months. That's when I went on my own, back to 60 mg. the starting dose for GCA.
Silver49 Guest
Posted
Oh gosh, I don't know what to say except that it certainly is prudent to see a new rheumatologist. I thought doctors were supposed to provide care and do no harm. Well you have not received care and are experiencing harm. I am so sorry that over and above all that you are experiencing with your MS you are suffering greatly with GCA and PMR . It is quite a long time until Thursday and I wonder if it is wise to wait until then. Is there any possibility of getting an earlier appointment? I suspect that is the earliest available but could you ask to be contacted if there's a cancellation? The fact that the numbers are higher than when you started would surely indicate a flare to the Rheumy. It does make me question the Rheumy.
I know you have asked about dealing with a flare but I only had one fairly near the beginning and upped my Pred. I only had PMR and not GCA . I don't know about upping your Pred more than you have but others will be along to answer your question soon. It must be very difficult trying to manage your knitting when you are in so much pain. Best wishes for an easing of your pain.
Guest Silver49
Posted
Thank you for checking in, Silver. My Thursday appointment at MGH is due to a cancellation. Otherwise, they are booking into November. So, I consider myself darn lucky to be getting to them this swiftly.
The Rheum I started with is an idiot and is not nice. I shall talk to my PCP about the referral to him. And I will start fresh at MGH and hope for the best.
dennis55149 Guest
Posted
I'm in the middle of a relapse - started me on 20mg for week then 10, started having breathing issues, felt like a ran a 10k walking up the stairs. Went to ER in NH and ran tests all normal. My Rheum dropped me on 2.5 mg, too quick. Thinking of also switching to Mass Gen so I'm curious to see if you like them.
Thanks
Guest dennis55149
Posted
Hi Dennis, Sorry to hear that things are not going well for you, I hope they improve. I will let you know how I do at MA General.
NH health care is very fractured and all over the place. Either drive 2 hours one way to Hanover or two hours the other way to Concord. When we retired we lived at our lake house in Southern NH for 3 years full time. We then sold it and returned to our home in MA.... because of the lack of neurology care in NH for my Multiple Sclerosis.
If you are used to living in NH, then you get used to living in your car for what ever you must do. We did not adjust well to that!
Hope you are feeling better today.
EileenH Guest
Posted
I do often wonder why some rheumies ever went into medicine in the first place! And then why they chose rheumatology as their specialist field!!!!
I think you will just have to be patient - because that dose should manage any PMR-type pain. Of course, it is quite possible it isn't "just" PMR ...
Guest EileenH
Posted
Eileen, the lack of care from this rheum has me slapping my forehead. He does not listen or consider. He just issues edicts and walks on.
I am a complicated case, there's no doubt about that, so going to MA General is my best move. The pain I have is pain I have never had with MS, it is totally different, and so I attribute it to PMR. We will know before the end of the week. I will not be surprised to end up on a biologic to bring down the inflammation, I think with my 4 auto immune disorders (I also have exzcema) prednisone is just not enough.
I have kept on waiting for that blessed relief from 60 mg prednisone/day and it's just not happening. I'll have my blood checked tomorrow and see what one week of that dose has done.
Thank you!
dennis55149 Guest
Posted
Thanks let me know how you like Mass Gen
Guest dennis55149
Posted
Hi Dennis, wanted you to know that today I have written a thread about my Thursday visit to MGH . Hope it is of help to you
snapperblue Guest
Posted
Dear Angela- You are in a tough position with MS and PMR, with an uncontrolled flare and possible GCA. On top of that, it may be time to add the word "iatrogenic" to your vocabulary, if you have not already. It refers to medical problems caused by doctors. In your case, to be fair, your doctor may not have caused your problems, bur he does not seem to be making them better.
I have had PMR about 4 yrs. My PCP (GP) used to say that he watched the inflammation markers but treated the PATIENT. If the patient has symptoms, that is what he pays attention to.
This morning , he said "We used to think markers of inflammation were useful for tracking PMR, but we don't anymore." That is certainly the collective wisdom on this forum and it looks like the doctors are catching up. At least some of them. My PCP in a local practice in Quincy MA seems more on top of things than your specialist.
I think it was reckless of him to do a 33 percent reduction in pred when you were in increasing distress. As we always say on the forum, "I am not a doctor," but he appears to be following a cookbook for dosing and ingnoring the person in front of him who is yelping in pain.
You should have better luck at MGH!
Guest snapperblue
Posted
Hello Snapper, And I think the word "iatrogenic" does, in fact, apply here. This doctor provided no education, guidance, or proper treatment. At any rate, I have a neat new word for my vocabulary.
And, yes, he was reckless with me, especially considering the reports I was sending to his office 2-3 times for 3 weeks or so.
Because I did now have a bomb of pain when I was diagnosed, the amount of pain I am in now is a great big eye opener. Today I have put on a 5mcg Butran patch, via my pain management clinic. The doctor there would like to isolate what is PMR pain, what is MS pain, what is 63 yo woman pain and feels that what ever pain remains in 3 days will be PMR pain. I have a really good idea which pain is which, but am glad to have this pain management doctor thinking smart.
I look forward to being at MGH, that is for sure.
Thank you! Angela
snapperblue Guest
Posted
Hi Angela- My PCP also maintains that none of our problems are CAUSED by old age. He sees too many patients who endure pain or other problems assuming that they are inevitable at one's age. True, certain conditions become more likely with age and we may not be able to fix some of them, but at least we should try to determine the cause. Being 63 is not a "cause" of pain!
Apart from PMR, I have had 2 years of horrific pain that sounds similar to what you describe. I have wandered from orthopedic guy #1 to pain guy to physiatrist to orthopedic guy #2 to neurosurgeon, getting shots into various glute muscles, into the hip joint, and into parts of the spinal column, with little to no effect.
Pain is very difficult to describe. I devised my own pain scale (since I found their 1 to 10 scale meaningless) based on whether the pain changed my breathing (anything below that was "discomfort," not pain), made me gasp, made me swear, made me drop to the ground, or made me unable to understand or reply to anyone speaking to me.
Bent over double, I could lurch a maximum of 6 to 100 feet and stand a maximum of 30 to 60 seconds.(I spent lots of time kneeling or sitting on the floor in stores and other public places!) Getting out of bed was a horror, taking a shower was an ordeal. Does this sound familiar?
There is a big difference between local pain and "systemic" pain, when it takes over your whole body and your mind. An axiom I discovered is "Pain makes you stupid." I could not think or concentrate or deal with anything except getting the dog to an off-leash park every day.
In the last month or two, this overwhelming, life-altering pain has mysteriously gone away (though the PMR just came back- you win a few, you lose a few).
Meanwhile, I am walking (slowly and clumsily) and am able to go sailing!! So hang in there! Love the pets, love the husband! You must get more from knitting than I do if it helps you stay sane in such grim times. Snap
Michdonn Guest
Posted
Angela, I to have a Rheumy who did not listen and I followed directions into to a flare. Started on 20mg had tapered to 7 mg quickly had a flare and to increase to 30mg to get relief. I now taper small amounts using DSNS method. Also I never taper if I have any PMR pain. I wish you good luck at MGH and smooth sailing on the rest of your PMR journey. Stay positive, active and try to smile. 🙂
Guest Michdonn
Posted
Thanks Mich! These Rheumy's of ours!!! What is with them? I am so done and am counting on the MGH Boston team to be ahead of the curve. Since this dr provided me absolutely no education about PMR and GCA I'm a real dumb cluck at this point, but am learning. I've now learned it can become one crazy painful experience. By large muscles feel like they've all been used to build a pyramid in Egypt, they are just torn up.
I do have a sharp pain management dr. and if you read my response to snapperblue, you'll see what that doctor is doing to help the MGH rheum separate my various categories of pain, although I have a really good idea about which is which.
I'm trying to stay positive, wish I could be active, and Hmmmm smile? OK!
Michdonn Guest
Posted
Angela, I know it sounds crazy, but when I was at my worse; I read that think positive and smile really does help. I was unable to walk with PMR pain, I worked as a ski instructor that winter. I still looking forward and working to do the same this year and be better. I may be nuts, but I still pushing ahead, with a smile! 🙂