Update on surgery and remission - still doing good - enrolling in a clinical trial, I hope

[krillemy]

I had surgery December 13th. They took 14 inches of my colon due to recurrent diverticulitis. And good they did. 5 inches was narrow and stiff and not functioning at all, as I also had a benign but inlfammed tumor over my bladder. So a lot of chronic inflammation has been going on for years they said. I could have set off the PM or fueling it they said (them being surgeons though :))

I am doing remarkably well (now), and have had no flair. I was down to 10 mg before the surgery, and they gave me IV hydrocortisone during the surgery, and some extra pred. the next day. Then back to 10 mg.

So still in remission, and seeing a rheumatologist next week, as my GP needs a written formal diagnosis or instruction to prescribe me more prednisolon! I do not have that formal diagnosis as they always thought it was something else or I was too young or not having racies CRP - or they were afraid it was GCA, but the hospital rheumatologists said no and never checked due to no raised CPR. So discared with no new diagnosis...

I hope the rheumatologist can help me as I have been invited to participate in a large clinical trial here en Denmark. They are looking into the adrenal function after long term treatment with pred. It's both blood tests and symptoms incl. quality of life. You enroll at 5 mg and continue tapper. If your adrenals are not working properly or not at all, some patients will be put on hyrocortisone and some not (?!) - I will have to ask what they mean excactly. It is fanstaisc. They aim to come up with a guidens to GP´s.

BUT - they need the diagnosis. Either GCA or PM. So we will see if I make it.

I am pain free, and can do most things just not for too long. I am not tired and my mind is clear. I even started to work a few hours a week, and can babysit my grandchild (he is 3).

So I still believe it is remission, but I breath and pace myself as recommend at this site

Have a nice weekend all!

[PMRpro Ambassador]

Good to hear you are doing well and do hope the removal of the offending inflamed region helps.

Possibly they will randomise patients to remain on just pred and taper or HC and taper as they seem to think that HC makes it more likely the adrenal function will return because it is out of the body faster, Unfortunately, for most people it doesn't manage the PMR very well at all and it has different side effects which are the deal breaker for some and they prefer pred.

pubmed.ncbi.nlm.nih.gov/297...

is interesting

[krillemy in reply to PMRpro]

Thank you,

That is indeed an interesting abstract! I had seen a possible connection between connective tissue disease and PMR but not this. It might explain why the surgeons seemed to emply some connection. I do fell more well than I have for 5 years or more.

Regarding the Clinical Trial. The doctor mentioned that HC it did not control the inflammation as well as Pred. and had other side effects. I must admit that was news to me. But patients stay on their pred. and just ad HC (ad on) in stressful situations.

I can send you the Patient information if you or here is the description of the trial.

clinicaltrials.gov/ct2/show...

[PMRpro Ambassador in reply to krillemy]

I think most on here in the past have decided to stick with pred. Better the devil you know ...

[SheffieldJane]

I was particularly interested in your post and PMRPro’s helpful reply. I have currently been experiencing low abdominal pain with diahorrea, lasting for at least 6 months. A colonoscopy late last year showed normal for my age diverticulosis. A recent poo test was abnormal with blood. This condition I believe was initially triggered by Tocilizumab and Pred ( PMR, GCA/LVV). The pain and feeling unwell with fatigue has worsened. My GP is sending me for a second colonoscopy although the last one was within 3 months. I would be interested to know how you were diagnosed? My GP wants to eliminate cancer. Obviously I would prefer a CT scan. I am pleased that you are doing well and are putting yourself forward for research which I have also done over the years. Anything that increases wider knowledge and expertise in our conditions. Take care! Many thanks.

[Theziggy in reply to SheffieldJane]

I hope you get it sorted Sheffield Jane

[krillemy in reply to SheffieldJane]

I knew since 2017 that I had diverticulosis and some stufness of the lower colon wall. This was from a colonoscopy, as I was followed after I had a stage 1 tumer remooved. I remember they asked if it gave me any symptoms. At the time I did not coulple it to the symptoms I has. Later as it got worse, I had blowting (now my stomac is FLAT!), flair with severe pain in my lower left side, sometimes starting in the mittle, so I thought it was a bladder infection and was put on antibiotic over the phone, as it was weekend. As it did not help and my temp. was raised, I saw my GP and she diagnosed me from the CRP (83), and history and the pain. It is very painfull if you press. She refered me to hospital, and they agreed and followed me for a 12 months, where I had many episodes. I tried diet change and antibiotic, with no effect. So they put me up for surgery. LOOONG waiting list, but I got worse and in Oct. they took me ind and CT-scanned me during a flair. 6 weeks after I had the surgery.

For a long time I thought at the symptoms was (ovulation, or the body trying to or a cyst). The feeling of sligt fever and tiredness due to PMR. I did have some periods with both diarrhea and constipation, but thought it was just life.

I hope they find out, but it can be difficult I guess if you have raised CRP due to GCA/PMR. Then I think they need to do a CT during an episode. The inflammation shows up on the CT.

Good luck 😊

[SheffieldJane]

That is incredibly helpful krillemy. It helps to have an idea of what to expect. Thank you. Take care of yourself. I envy you the joy of your grandson all the time. My three are in Australia and I miss them like crazy. X

[krillemy in reply to SheffieldJane]

Thanks - We took our 3 children to India for 2 years. I never did think of that, that our parents missed them - I do now. AUS is a long way away

[SheffieldJane]

I try hard to hide the missing part, I am sure your folks did too. My grandchildren have a really great outdoorsy life and a superb school. We see each other at least once a year. It leaves a big hole. They sobbed when we left in November - agony.