So Very Much Despair

Bones, joints and muscles
1

New member here, seeking support.

I am a 63 yo caucasian woman, I live in MA, USA. I've had many auto immune disorders over my life time, starting with severe excema as a young child. In my teens I had a 6 month case of mono that the pediatrician labelled as the "worse case he's ever treated." In my 20's I started with Multiple Sclerosis (studies connect this to the same virus that causes Mono.) MS has had a profound affect on my life in the past 10 years. I stopped driving and activities had to fall off the map bit by bit. I do still walk, although wear braces on my lower legs and use a walker. I have cognitive loss.

I am lucky that I live in a one story home with my husband, 3 dogs and 2 cats and a lovely garden yard. I have girlfriends that take me out to lunch once each week and make sure I have rides and "dates" for haircuts and pedicures,

After what seems like an eternity of me reporting to my PCP and neurologist "everything hurts" everything got real bad about 12 weeks ago. MS fatigue is bad enough, and a thicker layer fell upon me along with "everything hurts" becoming more focused. And, as usually has happened, I became my best advocate which led to me being diagnosed with PMR and GCA, (Sed Rate and CRP 4 x normal high). I have finished the 60 mg week for GCA and am now starting the 40 MG weeks, and on it will go. GCA was diagnosed via temporal artery biopsy.

I feel like death from the steroids and the damage left behind by PMR. I'm going to be on treatment forever, it seems. I've lost the use of my hands, as PMR affected my wrists and totally closed the carpal tunnel. I had carpal tunnel surgery in 1996 and it will need to be done again, more extensively. I suppose that won't happen until I am in remission from PMR.? I do not know what I will do if the function of my hands cannot be restored.

All I had going for me is my quilting and knitting, and now that is gone. I am part of nothing now. My hands are useless. If I pick something up, I drop it. I used to type 120 wpm and I am typing now with my pointer fingers only. I have adapted my knitting to enable me to knit for limited intervals, doing none of the master level work I used to do. I cannot work at quilting at all.

I have no idea how to live like this. With the 3 disorders eating me up, it is very difficult for me to consider going out and about. It's all so very difficult. I am so very tired and do not sleep well, in spite of a major cocktail of MS symptoms meds at night time.

I really need some support, and I hope that I have come to the right place for that and advice.

Thank you and I understand what you are all going through too, and hopefully as I walk this road, I will find ways to be involved here and help others as they arrive.

Peace.

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Hi Angela, I read your story and thought that there was little I could say to give you comfort, then realised that hopefully knowing that someone has read your story and is thinking about you will be enough.

Not that this will make you feel any better but I thought I'd share my journey with PMR and AS with you. II have had ups and downs since 2016, I am now 51 and it is not easy. Currently I am being told I have not got PMR by the Rhummy and he wants me off steroids as my Osteoporosis is getting worse because of them. The only thing that has made me feel any better over the years is steroids but I feel that I should listen to him as he is the expert after all. Currently I am in a lot of pain, in my neck, shoulders and legs and am waiting for a new drug called Golimumab to kick in. It could take another 3 months before I begin to feel better if they have the diagnosis right.

I do still work and find that getting going in the morning is better for me mentally if not physically. I had a phone call from the Rhummy nurse the other day who caught me at a bad time and told me I was having a flair and I should go home and take pain killers and lie on the settee. Made me laugh as this is the worst position for me to lie in.

Why did I tell you this when you are in such a bad way? Probably to let you know that in a small way I know how you are feeling. You sound like a very brave woman and should know that you have done amazingly so far. Someone far better qualified than me will hopefully post a response soon!

I hope you find something that works for you but know that we are all on this journey together.
Elizabeth

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hi Elizabeth....I'm on my my way to bed right now, but I'll text you tomorrow. you're NOT alone!!😘Lynda

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Hi Lynda, you need to reply to Angela (think you hit reply to me instead!) Sleep well! Elizabeth

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I am sorry to learn that you now have GCA and PMR, Angela. You have coped with so much and adapted well to all that has come your way. It is a huge blow to have this on top of everything else. I am not an expert but have just reached the end of my PMR journey after a little over 4 years. I wonder if the pain in your hands is a part of PMR which will eventually ease. I have had this problem on and off and I find even now it happens if I do something which means my hands are in the same position for too long. It has eased over time and I can do more so I hope this will be the same for you. I realise it will be harder for you as it is affecting some of your main pleasures in life. There are others on this forum who are experts and can give advice/information and will be along soon to help. This forum has people on it from many parts of the world so we are awake or asleep at different times. The plus part of that is that you will usually get a reply at least of support even if the person is unable to answer your questions. Best wishes.

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Angela,

I am so sorry to hear of your despair. I can only imagine what you've been through.

All I can say is that the PMR-facet of your troubles might not be as bad as you think. When I first was diagnosed, I was very depressed. But after that initial high dosage of prednisone, and after tapering down to more reasonable levels, I felt better than I had in a long time.

All I can hope and pray for is that the PMR will be somewhat of a blessing in disguise for you. I hope the prednisone treatments will help you, fast.

You deserve a break.

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I'm so sorry to hear your double whammy - MS is awful enough, to add PMR to it is just horrible. You have had so much taken away - so demoralising.

It is possible that the pred may improve the carpal tunnel problems - it is often found alongside/as part of PMR because of the swelling it causes and once that responds to the pred it may be better. I do know of people who have had surgery while on pred but none at GCA doses because of the risk of infection. Below about 15-20mg it depends on finding a surgeon who will do it. 10mg doesn't seem to be a major problem. I had awful hand and foot pain with PMR which stopped me knitting and sometimes made typing very unpleasant but it did improve and after a few months on 15mg pred was gone. It only reminds me when I flare now.

What about trying voice recognition software to save your hands a bit instead of typing? It is so much better these days.

"I'm going to be on treatment forever, it seems" - is that what you feel or has a doctor told you that? Of all the a/i disorders PMR/GCA is one of the better ones in that they are described as self-limiting and do go into remission for 95% of patients eventually, for some as soon as 2 years. They are also well managed with pred - even though it won't feel like that yet. The PMR part in particular will improve a lot at the doses you are on at present.

There is so little I can say - except that, however bad it is at the moment, in a year you will look back and see how far you have come. For many people the first 2 or 3 months are the worst and then things improve dramatically so let's hope you are one of them. And I'm so glad you have good girl-friends - that is worth so much.

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Pretty soon I will be known on this discussion group as "Hot Tub Bob" since it transformed my situation and still is continuing to do so for my PMR which started almost a year ago. At my worst, before I started on 20mg of prednisone (now am down to 7mg), my arms and wrists were so bad, I was having to lift a coffee cup with 2 hands. We had to move all our dishes done to the lowest cabinet so I could reach them. Getting shoes and socks on, as well as putting on a car safety belt was a painful challenge. I'm lucky that every since I was a boy with a morning paper route (now am turning 73), I get up at 4:30 in the morning. My neck and shoulders are very stiff, but after doing about 10 minutes of exercises in the hot tub, the pain and stiffness almost completely disappears. I would see if you could possibly have access to a whirlpool or maybe just a swimming pool. I'm convinced that just being in water and exercising is probably the best thing you could do to keep active but to not overdo it.

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Angela you did the right thing joining this forum. There are so many people here that will help you. Do hope you will be feeling a little better verysoon. Mary

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Angela,

Your writing is clear and concise, and I admire the mind that generated this considered composition. To be able to articulate this so well, while shouldering such a burden! You captured the emotions which we all here have experienced, although, mostly to a lesser degree than you.

I'm in Florida, but think the incidence of PMR here in the US is less than in Europe.

With compassion and admiration,

Dan

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In Florida possibly - but in Minnesota and up that end there are lots more with a Scandinavian heritage.

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Angela: I just said a prayer for your recovery. My rheumy told me that my pmr is "worse than 90% of all other cases" which is why I have been on higher doses of pred for so long. I am now trying to continue the weaning off process. Walking is tough because of the pmr pains in the back of my thighs plus the fact that I have neuropathy (numbness) in my feet which varies in severity. (I am not diabetic) I also take warafin (blood thinner) because I had a blood clot in my calf a couple of years ago. I am only 63 yrs old, which these days is not ancient, but I am feeling about 93 some days. I have been relatively healthy all my life until the last few years. So I know what you are talking about when you say you cannot do some of the pleasurable activities you used to do. Mine was playing golf, which I cannot reasonably do with the pmr pains and the neuropathy. But, even though this is discouraging, I can still get around reasonably well, still driving, still working in my business (have been joined by my son who will take over in a few years.) I have suffered numerous falls and have to be careful when I am walking not to trip on something. I have a great, supportive wife, three great adult children, and a little Corgi dog who is my only grandchild so far but sometimes drives me nuts with his barking. So, I count my blessings. Your journey has been tougher than mine for a much longer time. But I would hope you work with your doctors, do not despair, and just know that the door is open for your restored health, total or partial. Let's pray for each other!

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Yes, more in one county in Minnesota. That one county is the area in the US that they talk about.

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Hi Angela, I'm so sorry to hear you are having such an awful time with your health. PMR on top off your other diseases seems completely unfair.

I'm 66 year d Oregon woman and just got my diagnosis/prednisone a few weeks ago. PMR seems crazy difficult to understand but I am so grateful for finding this forum. it is a warm and welcoming place with good people who are generous with their knowledge and advice.

Prayers for some pain free days ahead, Blessings, Hazel

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Hi Angela I just want to tell you I am thinking about you.

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Hello all,

I am sorry it has taken me so long to get back to you all. I wanted to reply to all at once, I hope this method works. I do not have enough use in my hands right now to reply individually, although that is what I would prefer to do. Hopefully that will be sooner rather than later. And yes I am looking at speech recognition software so that I can more easily communicate on my computer.

You've all given me great insight, support and advice, please know I feel your sincerity and appreciate it greatly.

As for my treatment right now.... The rheumatologist is first smacking me with the high dose prednisone required to get the Giant Cell Arteritis into remission. This takes many many weeks, started at 70 mg for 10 days and then reduce very slowly, 4 weeks on each step down. These high doses of prednisone bring on their own problems, as you all know. We have gotten the heartburn under control, for the most part. I break through once in a while. I am on 40 mg omperazole in the morning and if I break through in the evening, I can take 20 mg before bed. Sleep is somewhat elusive, but I am getting just enough and often catch a nap in the late afternoon when the prednisone crashes for a while. I am very tired.

I have been to a cardiologist, who is running baseline testing so we have a handle on the potential cardiac risks associated with GCA. My Primary Care Physician has seen me this week and she is the "leader of the band," and is paying close attention to all info and test results from the specialists taking care of me. I've been her patient for many years, and we have a good relationship. I am grateful for that.

My Sed Rate and CRP have gone from 4x high normal to low normal at the latest bloodwork. I do know that means nothing, that if we stopped treatment they'd shoot straight back to the ceiling, But it is good to know that the prednisone is working.

As for the PMR, this will be addressed as I wean down off the prednisone for GCA. That wean will sit at 20 mg for a while and at some point there will be a very very slow reduction in dosage. And, we will see what the PMR does. There is no crystal ball, darn it! I have noticed that the high dose steroids for GCA have gotten rid of some pain that I've been chalking off to being a part of MS. I've had pain in my thigh above my knee replacement for a long time. That has diminished greatly. And some other positive benefits: I'd been getting up ugly every morning for months, now I feel sunnier even though I am waking hours earlier than I was before diagnosis. My husband has noticed this change and I am glad for that. My arms and wrists still feel funky, and I hope that improves with time. My lower back pain is gone, completely gone. I am very very weak, and that is not a big surprise. I am working hard to practice patience in all areas of my life,

This is a lot to deal with, along with Secondary Progressive MS. This week I have centered my mind on living in the moment and doing what I can do, the best I can do. Small tasks like keeping the house tidy, sewing for 10 minutes, knitting for 15 minutes, are helpful. Friends do not understand that I am in no shape to go anywhere right now and I work to explain but this is such a clinically insane picture, so hard for me to grasp, I cannot expect others to fully understand.

MS and HEAT are a terrible combination, and it is stinking hot an humid here in New England right now. I am lucky to have central a/c and I am keeping it at 68 degrees, my best temperature year round. I look forward to mid-August, when cold fronts will start dropping down from our Canadian friends to the North.

My hands, time will tell. No one will test them or look at them or think about them until I'm much further down this road, So, as I mentioned above, I am doing the best I can do with what I've got. I do feel some despair that I have two new auto immune diseases that could take years to get into remission and that could relapse. It is never smart to look too far down the road, though, and centering my mind and spirit is helping me to avoid that behavior,

All in all I am better than I was at my first posting. And I believe that improvement is due to all of the support I have been given by all of you.

I will continue to check in and hope that once I am "used" to being this way and on the treatment that I will become more experienced and knowledgeable in order to help others that come to this board.

Peace, Angela

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Thank you for sharing your story Elizabeth. I hope that you get some relief from Giolimumab. Osteoporosis is a great big problem on long-term prednisone, and you are very young.

My recent bone density test showed that my bones are 75% denser than other women my age.... and now I'm going to be undoing that. I am taking Fosamax, a drug I SWORE I would never take. But with my high risk of falls due to my MS, I really have no choices.

Please keep in touch and we'll march along together.

Be well.

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Thank you for your kind reply, Silver,

I am glad to hear that you are at the end of your PMR journey. And thank you for sharing your hope for my hands!!! I do appreciate that immensely.

Since I'm on high dose prednisone for GCA first, then will be on lower dose for RMA, who knows when there's a doctor who will even think of testing for carpal tunnel vs. MS vs. RMA. These diseases require a patient patient.

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Bob,

Thank you for your hopeful message. Yes, this journey of mine has been one heck of a ride. In between the auto immune stories, though, stands a now 63 yo life long outdoorswoman. The places I've been and seen! I did it all when I could, having no idea what was going to come down the road ahead.

I look forward to tapering down on the prednisone. The GCA treatment starts very high and lasts very long, 4 weeks at each step down.

And, ya, who knows? I could very well end up feeling better than I have for a very long time. That'd be pretty cool.

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Hello Eileen and thank you for sharing your experience and advice, I do appreciate it.

I am living moment to moment, and am doing well with this. I do what I can when I can do it. And I do not push myself.... that's very strange, because with MS you PUSH PUSH PUSH. It's a weird adjustment.

And, yes, it is one thing at a time and I'm more in a place of acceptance now. First GCA and after that PMR and after that.... the remnants.

No knowing what those will be, so I'll just do my best each day. No, my doctor did not tell me I'd be on treatment forever, it's just the way I felt with these diagnoses. Time will tell, I will go with that.

And, yes, I am looking at speech recognition software, although I'm kind of enjoying the mostly unplugged life!