Going into month 2 of GCA and PMR

[Tj2017]

Hello everyone,

I thought I would post an update on my progress since my original diagnosis and posts on this site. First, thanks to those who responded to my posts and read my long post regarding my internet search and the amount of misleading information on the web. I appreciated all the links provided and also found some additional informative sites.

Well, what I have learned. I have come to accept I am pretty much powerless over this illness and it is going to be a journey. In have also learned that I am empowered to be actionable in my management of my journey and it is very challenging. I can effect change in some areas, such as diet, yet not so much in areas like chronic fatigue or unexpected painful days.

I have managed to improve my diet by decreasing carbs and sugars. My weight did increase a bit, yet it seems my fat has been redistributed from my buttocks to create a very ugly fat collar around my lower neck. Ugly! Not a thing I can do to change that as it is a result of the prednisone.

I had blood drawn today so I'll have more info next week when I visit my GP. They have me alternated with biweekly visits with the GP and Rhuemy.

Chronic fatigue is a constant companion right now as well as off and on GCA/PMR symptoms. I am still taking 60 mg a day of prednisone and experience temple pain and much milder vision issues. When I walk, my legs feel like I am walking against the ocean surf. One slow step at a time. And than I have a day with minimal symptoms and rejoice. Learning to pace is just going to take time. I haven't found any real patterns except limiting activities to an hour or so at a time and not using large muscle groups to vacuum, hike, etc.

Insomnia is another companion, and I even tried activan to help sleep. It is like something shakes my body awake after an hour or so of rest. Of course, I am usually drenched upon waking. I am getting a little grumpy. This sounds like a good whine, yet many of you know, prior to the steroids I was pretty much immobile (like many of you) and in significant pain, with double vision and black spots. I am happy to be making progress and grateful for this forum. I have read many of the earlier post and know that I am not alone in my journey.

I also learned PMR is also considered a mixed connective tissue disease. So, PMR is an inflammatory, autoimmune, vascular and mixed connective tissue disease in which all subgroups should be addressed to promote recovery. I have self defined "promote recovery" as actionable efforts which will minimize pain, build strength and maximize life quality as reasonable as possible within ones life. (How does one do all this? - I do tend to over complicate. And prednisone side effects is another subgroup in itself.)

I am convinced this can't be done alone and takes a team effort. I am also convinced the support on HU is a key part of my team as I don't think the widespread medical community is quite there yet. The advice you all have provided has been invaluable.

Thanks again to the local experts and your replies. I hope everyone's journey is better coming into the weekend.

Best,

TJ

[DorsetLady PMRGCAuk volunteer]

Hi TJ,

I think one of the most difficult things is acceptance of GCA/PMR, once you've done that you've taken the first, albeit small, step to recovery.

You may feel powerless, and you are to a certain degree in that you don't know how long you will have the illness, but you are not powerless per se - how you act and think will aid your journey. Okay, you cannot do everything in the same way pre GCA, but you can still enjoy life, you just have to put a bit more into the planning side of things, and maybe drift along in the slow lane for a while - but that's not such a bad thing in this manic world.

Insomnia certainly is a problem, particularly on the doses you're on. I found I got to sleep okay, but then woke about 2.30 -3.00 am raring to go! Mine only lasted about 4 months fortunately, and was about this time of year, so many a summer morning I was sitting in garden about 5am having a cup of tea! Still it was the summer, so not all bad! For many people is does go on longer, but it should improve as you reduce Pred.

Take care.

[Tj2017 in reply to DorsetLady]

thanks DorsetLady,

I managed to stay in bed until 4:41 this morning and your post lightened my day. Instead of getting frustrated, I enjoyed the early morning sun with my kitty. I have a new quiet time to look forward to over the summer months. I spent the time present in the moment, rather than mania.

Best,

TJ

[DorsetLady PMRGCAuk volunteer in reply to Tj2017]

Good, you have to take all the positives when you can!

[SheffieldJane]

Hi TJ2017, thank you for your wise, measured, informative post. Please continue to let us know how you are getting on. Best wishes and may it pass quickly.

[PMRpro Ambassador]

I just want to address a few points - but overall I do take your points.

PMR isn't considered to be the same as MCTD which is a defined disorder:

"Mixed connective tissue disease (MCTD) is an uncommon, specifically defined overlap syndrome characterized by clinical features of SLE, systemic sclerosis, and polymyositis with very high titers of circulating antinuclear antibody to a ribonucleoprotein antigen. Hand swelling, Raynaud phenomenon, polyarthralgia, inflammatory myopathy, esophageal hypomotility, and pulmonary dysfunction are common. Diagnosis is by the combination of clinical features, antibodies to ribonucleoprotein, and absence of antibodies specific for other autoimmune diseases. Treatment varies with disease severity and organ involvement but usually includes corticosteroids and additional immunosuppressants."

When I lost the weight I had gained with pred the first place it went from was around my midriff but then my face and eventually the buffalo hump disappeared too. I'm still on pred but you wouldn't know.

Chronic fatigue can only be managed by pacing. Have I given you this link?

healthunlocked.com/pmrgcauk...

If I have, sorry for repeating myself. However - when you have a good day are you then having a bad day as payback? Keeping a diary, an honest one, will help you identify triggers. I think an hour or so at a time may still be too much - break even that down into smaller bites and rest in between. You don't have to lie down in bed - but 10 mins of dusting (a pointless exercise though it is) followed by 10 minutes "resting" doing something different that uses different muscles helps. But at present, on 60mg of pred, you are still a poorly person and should really be behaving as such. Not doing the cleaning...

[Tj2017 in reply to PMRpro]

Thanks PMRPro,

Your continued is advice is appreciated as well as for the clarification. It's difficult, for me, to keep the specific syndromes names, disorder names and disease names in the appropriate classification (?), as they often refer to overlapping clinical presentations verses a specific diagnosis based on clinical evidence. (I am sure I can find better words to try to say what I mean, yet it is early here in California.).

I did find interesting post where folks with PMR had cold hands, tingling, etc. I personally had cold feet (which I never had before) until the steroids.

And yes, thank you, you did provide the pacing link. And, I am still reminding myself that I am not going to push myself to recovery. I have lived by the motto, "when the going gets tough, the tough get going" for 50 some odd years. It is hard to jump off for a while. However, it is time for me to take a break and heal. It doesn't help when friends and family keep saying, "you look great, you just need to get out." No, really I need another nap.

My diary on my iPad got wiped out when I upgraded my iOS the other day, so starting one new today on paper.

I know I am being vain, yet I hate the presence of this fat collar around my lower neck. The humpback is popping up, yet right now the fat is depositing around my front collar bone. Ugly. It looks swollen like I broke my collar bone. Weird? It is nice to know it won't be there forever. I am getting some skinny legs!

Best,

TJ

[PMRpro Ambassador in reply to Tj2017]

I banned mirrors - just the ones in the bathrooms and I couldn't escape the one in the lift. Going to the hairdresser's was not a pleasant experience! Luckily I have to remove my specs and without them I can't see

But it has almost all gone now. This too shall pass...

[DorsetLady PMRGCAuk volunteer in reply to Tj2017]

Yes we all have elements of when "the tough gets going" syndrome- that's probably why we're here in the first place.

As the song from Frozen goes (you'll know it if you have grandchildren) "Let it go" - perhaps that should be our new mantra - I've made it mine on occasions over the last 6 years!

[Tj2017 in reply to PMRpro]

PMRPro,

I took your advice and had a wonderful day. No chores, and than my daughter had me over for dinner with her and my three wonderful grandchildren. Movies, chocolate, baths and bedtimes. Wonderful gift of a day!

TJ

[Cookiekelly]

A really beautifully written summary of the complexities of this illness. Thank you

[Tj2017]

Thank you cookie Kelly!

[Tj2017]

Hello all,

TooSore left a reply asking for more info regarding mixed connective tissue disorder and I can not seem to find her post any place other than my email inbox. Therefore, I will just reply here to her request. First, PMRPro clarified my earlier post and provided the description of MCTD. Thanks again.

Listed below is what I learned from surfing the internet and prompted my comment in my post. It seemed to make sense to me as with other vascular diseases when the arteries are inflamed this than blocks nutrients from reaching connective tissues. If I understand correctly (and experts pls correct me if wrong), the lack of nutrients reaching the muscles and connective tissues are what causes our muscles to be intolerant of acute exercise. (Or it seems, for me right now, any exercise!) Hence the need to heal and take it easy as the steroids start to work on reducing the inflammation.

This is from NORD - National Organization for Rare Diseases

"Mixed connective tissue disease (MCTD) is a rare inflammatory disorder of the connective tissue. The symptoms of this disorder overlap with those of giant cell arteritis, lupus (systemic lupus erythematosus), scleroderma, and polymyositis. Early symptoms may include a fever of unknown origin, painfully cold fingers in response to cold (raynaurd phenomenon), swollen hands, fatigue, and/or nondeforming arthritis....Muscle pain and skin rashes are also very common."

This paragraph is included in the section of the NORD website which describes GCA as a rare chronic inflammatory disease characterized by the inflammation of many ateries of the body.

I found this interesting as the weeks went by without a diagnosis, my pain increased as well as my list of symptoms which now included very cold feet and hands, and unresolvable rashes along the right side of my face and neck. It is very unusual for me to have a rash anywhere.

Have a great day!

TJ

[PMRpro Ambassador in reply to Tj2017]

"the lack of nutrients reaching the muscles and connective tissues are what causes our muscles to be intolerant of acute exercise. "

That is very likely the case pre-pred as there is inflammation in the blood vessel walls which narrows them and reduces blood flow- though there is no real evidence of that in PMR but is a supposition based on the assumption that it is a microcirculation problem (in the very small blood vessels, while GCA is a disease of large and medium sized arteries). The continuing autoimmune disorder is damaging the muscles in some way and impairs their ability to signal they have been over-used and also their ability to repair themselves after use. "Training" is just the muscles repairing tiny tears in them sustained during use - and training is required for doing ANY activity using muscles that aren't used to that action.

My own suspicion is that something to do with mitochondrial function is involved - but I'm not really in a position to get it looked into. However - that said - at my suggestion, the muscle biopsy that is taken from patients who agree to it in the Leeds study is being used for that. I know some patients have agreed to undergo it. I'd be there in a shot if I weren't on anticoagulant therapy!

[Tj2017 in reply to PMRpro]

Thanks! I look forward to learning more and all your support!

[kellykel]

Wow. You have articulated my experience so well. Thank you. Your post reminded me, as I lie here this morning in tears (on a string of difficult days which tax my emotional bank more than anything) there was some comfort in knowing I am not the only one going through this.

I know staying positive, mentally strong and finding whatever joy I can in the moment is so important. But, staying in that mental state is really challenging for me. Especially when my pain, fatigue or steroid side effects are high for hours and hours and days and days at a time. I get very sad and sometimes despairing about how I am going to endure this another day. After more than a year of either 24/7 severe GCA pain (eventually completely bed-bound and feeling like a hospice patient from the medical community) I was finally diagnosed and helped with 40mg. steriods. They gave me some energy for a bit, but my face swelled and my stomach started getting very swollen, distended and fat.

As a 53 year old who has been very active, fit, and have worked full-time for 30 years - raised a family, ran, biked, camped, traveled, etc., etc., I sometimes cannot believe what my life is now day to day.

Today is another tough, tough emotional day. Thank you for your post.

[Tj2017 in reply to kellykel]

Kelley Keil,

I am pushing you warm positive thoughts towards you as we share this journey together. I am 54 years old so it seems we have a very parallel path. I am thankful to read the posts on this site of folks that have "made it through" the tunnel. It helps me keep those positive thoughts and remind myself that the steroids mess with my emotional side.

Life is not over, it's just going to be different and perhaps even better. (I am working on a new mantra.)

Wishing you a string of "good days" and warm hugs.

TJ