PMRGCAuk
7,225 members11,723 posts

Good news today

I was diagnosed with PMR in Dec of 2016. I started on 20 mgs of prednisone and have been tritating down monthly. I had some other health problems too at the same time including a new diagnosis of Raynauds Syndrome and a chronic case of anemia. I was very fatigued and I felt that the anemia was not the main reason for my fatigue. I understand that PMR can cause the fatigue, but the anemia would not clear up. My PCP sent me to a hematologist who is also an oncologist, and he did some in-depth testing to see why I was chronically anemic. Come to find out I had Marginal Zone, B cell lymphoma - stage 2b. I had a bone marrow biopsy and a bone biopsy done to confirm this. My marrow was not producing red blood cells well and my spleen was hoarding some of these RBC's causing my spleen to be twice the size it should have been. I also had a tumor in my spleen and some lymphatic cancer cells in other parts of my abdomen. I had a cat scan done with contrast and it showed my lungs and liver had some cells.

I started on infusions with a drug called Ritux. I had 4 infusions - once every week for a month. It was not chemo per say, but rather a drug that helps your immune system help itself. It was supposed to kill the tumor in my spleen and the other cancer cells elsewhere.

Today I found out that I am in remission from the lymphoma. And I also saw the rheumatologist and my blood work showed my ESR was at 5 and my CRP was <5! I feel like my normal self. As discussed here before, the PMR happened to be a differential diagnosis for me and the lymphoma was causing my immune system to go crazy with auto-immune conditions. My body reacted with a CRP of 82 in December of last year. It wasn't until I finished the Ritux, that my levels decreased measurably.

Not everyone has as many complications as I did, but I am glad I pursued the chronic anemia and didn't settle with that diagnosis. So from start of my PMR diagnosis to now - 8 months, it has been a medical journey. So far I have a good outcome, but I have to be tested every few weeks to make sure I am holding steady with my numbers. I am going to finish out my prednisone protocol until January as recommended by my rheumatoid doctor. I agree with him even though I would love to go off the prednisone today!

I will keep you all posted.

13 Replies
oldestnewest

What an interesting case history yours is, with lessons for us all. I am happy for you that your Lymphoma is in remission! You've been on such a journey and yet you actually feel normal! I'm not sure that I even know what normal is anymore. I hope that you continue to get more and more healthy and kick nasty old Pred right out of your life soon! Hurrah for you!

3 likes
Reply

When I think back, I wasn't feeling well starting in the Spring of 2016. That is when I was diagnosed with Reynauds. My CRP was at 18 then. Imagine my dismay when it was at 82 in Dec of that year?

Reply

Crikey!

1 like
Reply

Congrats on getting the lymphoma into remission and best wishes for continued good health! 💕

2 likes
Reply

What a journey! Puts some of my difficulties into insignificance. So pleased that things seem to be working out well for you now. Onwards and upwards! X Jackie

1 like
Reply

So glad you are feeling better and have clear diagnoses. It goes to show that we need to ask questions!

1 like
Reply

Wonderful news!!

2 likes
Reply

Good news - and long may it last.

But it really underlines the fact that a GP shouldn't jump to conclusions about PMR symptoms but do all the testing they can just to be sure. PMR is a name given to symptoms of something else, it isn't the disease.

2 likes
Reply

So true! I didn't know that at the time, but I sure know it now! Thanks to you and this site! I can only tell my story as each case is different, but there are some common threads held by all of us. Never give up about your health. We may not be doctors, but we know our bodies!

2 likes
Reply

That is wonderful news congratulations!

1 like
Reply

Your story is quite similar to mine. Now, I think my problems started long before I found out how sick I was. I had hip bursitis confirmed at least four years ago. I thought it was an ageing problem only. After attending a sjogren syndrome symposium in rainy and cold Bergen, Norway (my home country) in may 2015, I started to cough much much worse than I used to. Had dry coughed for many years before due to sjogrens, but this time I coughed so much phlegm that I went straight to ER When I was home. Had pneumonia and high infection markers (crp 94). After three courses of antibiotics the cough had disappeared, but the pain in neck, upper back, shoulders, buttocks and thigh made a bell ring for me, as I had many yrars experience as a reg n at a rheumatology department. I must add that the inflammation markers had stayed high long after the pneumonia was cured. ESR was taken first time almost 11/2month after I had atarted treatment for pneumonia, and it was 82. Bu that time crp had fallen from 113 to 52. No need dt say that that summer was spent visiting my gp's office! My then new gp saved money, evidentely, and he only tested simple haematogram which didn't include the tests that could have revealed what was REALLY wrong with me😡 As I started to have problems with my vocal cords, he sent me to my former gp who was an ent specialist and who knew me from many years back. It was he who took the right tests and found out there was something very wrong with my blood. He sent me to a haematologist. Meanwhile, pmr was full blown, and I made an appointment with a rheumy at my old working place.

1 like
Reply

There is something wrong with my bone marrow and red blood cells too. I thought I had leukemia or myeloma. But the hemotologist zeroed in on the lymphoma tumor in my spleen and the hoarding of the rbc's in my spleen. My protein markers point towards myeloma, but I guess it's not that. At any rate, I am in remission and I will take that for now! Much luck to you and never give up questioning. This is what I did for many months - not being satisfied until I was satisfied that everything was covered. Research too on my part.

1 like
Reply

Fortunately, the treatment for lymphoma is so much better noe than only a few years ago👍❤

2 likes
Reply

You may also like...