Paraneoplastic Myopathy

[nymima01]

GM All! I was diagnosed with PMR in Dec of 2016. All is well with prednisone and tapering for me so far. In May of this year I was diagnosed with Lymphoma in my spleen. Stage 2b. I just finished IV immunotherapy with a drug called Ritux and am waiting test results to see if I am in remission.

I noticed on my bloodwork paperwork there is an assessment category and the PMR, lymphoma and "paraneoplastic myopathy" is listed too. My doctor never addressed this "paraneoplastic myopathy" with me and I am wondering if anyone knows how this translates to PMR - if at all? For me it is a muscle condition and I know PMR affects the muscles. I do get terrible leg cramps at night, but not sure if this pertains to PMR or not. I see the doctor next Friday and plan on asking him about this new "assessment", but thought I would ask if anyone else ever experienced this condition. It may pertain to my lymphoma, but thought I would ask anyway.

All research I have done points to small cell lung cancer with this paraneoplastic myopathy, and as far as I know, I don't have that!! Thank goodness for small favors......

[Aleish]

I hope you continue to heal. Never heard of the last issue.

[PMRpro Ambassador]

PMR is sometimes due to an underlying cancer and that is something which should be investigated and ruled out before a diagnosis of "just" PMR is settled on. I think lymphoma is one of them. The PMR symptoms you had were probably due to the malignancy - so once it is in remission, you may/should find the PMR also resolves.

[nymima01 in reply to PMRpro]

Yes - My oncologist said this may happen. I suppose my rheumatologist would be able to tell by my CRP number - which was still high before I started my immunotherapy for the lymphoma. It was at 64 at last check - down from 82 the time before. (After 5 months on prednisone). That number hadn't dropped too much to my doctor's satisfaction and he wanted to start me on methotrexate. We decided not to go that route after the diagnosis of the lymphoma.

[PMRpro Ambassador in reply to nymima01]

Not really - CRP is so non-specific. All it really tells them is there is SOMETHING wrong and it could be one (or more) of a lot of things. Lymphoma also causes elevated CRP - so that probably is the cause of it not falling as much as your doctor expected. It seems a bit overkill to use methotrexate when you have also had chemo though I suppose Rituxan is probably a very specific immunosuppressant.- if the PMR symptoms are OK I think I'd be inclined to put the CRP down to the lymphoma for the moment. And I also would be putting perhaps more weight on the oncologist's input - and couldn't they get together and discuss it? Hope springs eternal...

[nymima01 in reply to PMRpro]

Good suggestion! My oncologist does email or communicate with the rheumy doctor. The oncologist nixed the methaldextrate before I even started it. I had reservations about it anyway......

[PMRandRA in reply to PMRpro]

Never knew that before! Why aren't we told these things by the medics or do they test surrepticiously and only tell us if results are positive?

[PMRpro Ambassador in reply to PMRandRA]

Depends on your doctor I suppose. No doctor would get much past me! I read my prescriptions and ask for things to be added if it is possible. And I ask to see my results.

Here in northern Italy we are encouraged to pick up our own results and keep records with them - you need them if you have to go to some of the other hospitals anyway. Some of the hospitals are already linked on the computer system but not all. We can even have imaging results burnt onto a CD for the grand sum of 5 euros (each I am assuming).

[Patience_1 in reply to PMRpro]

Hello PMRpro, am just wondering if you know what the tests to rule out underlying cancer consist of? It seems to me that nothing much is made explicit when tests are arranged - in my case just the focus on esr and crp (both of which were only very slightly elevated). There are various other readings from my blood tests (which I do have copies of), but apart from the obvious ones like haemoglobin & platelet counts and thyroid function, I'm left wondering exactly what they mean. I haven't pursued it with my gp, as all readings have been within the ranges given, but it leaves me uncertain how thorough the tests have been.

[PMRpro Ambassador in reply to Patience_1]

Basically the full blood count (red cells, white cells and differential white cells etc) should tell them a lot about what may be going on. They would almost certainly be awry in lymphoma for example - neutrophils might be low, total white count low). Lymphoma should turn up in a good physical examination with swollen lymph nodes.

This is one of the problems - the symptoms we are all so familiar with are common to a whole range of disorders, particularly autoimmune ones. It is even more difficult for those if us with low ESR/CRP - but for patients with raised CRP who are told it is PMR, alarm bells should be ringing when it doesn't fall with pred or the symptoms don't improve as well as expected. It may not be cancer - but there is no excuse for not having a VERY good look.

[Patience_1 in reply to PMRpro]

Very many thanks - so informative as always. I do so wish the medics would be explicit in their communications. Those patients who prefer not to know could always give that rider; and those who want to be well informed wouldn't have to spend time dancing round or speculating!

[nymima01 in reply to PMRpro]

Yes! I am glad I pushed for more tests. If I had accepted the anemia "as is", the lymphoma would not have been detected early enough. As it is I am in stage 2b. (There are 4 stages).

[nymima01 in reply to Patience_1]

My case was the chronic anemia and wondering why I had anemia all of a sudden. (Actually it wasn't sudden - but I never had anemia before). It was a few months of not being able to manage the anemia that I insisted on seeing a hemotologist. My PCP referred me to one finally after my insistance.

[Bittebitt]

I also have PMR as a paraneoplastic syndrome. I was diagnosed with cmml, a rare type leukemia, last july. I also have Immune thrombocytopenia. Usually one has thrombocytosis with PMR. Underlying cancer should be investigated if the patient has thrombocytopenia, I have read some places like medscape and pubmed.

[nymima01 in reply to Bittebitt]

Yes! This makes some sense to me. I had some chronic anemia going on and my spleen was twice the size as it should be. My liver was inflamed too. I insisted on having my anemia looked into more as I had never been anemic. My PCP sent me to the hemotologist who also happens to be an oncologist and he ran in-depth tests to rule things out. I showed positive for certain proteins in my blood for cancer. I had a cat scan done as well as bone marrow and bone test and lymphoma was discovered in my spleen. I have Marginal Zone B cell lymphoma of the spleen - a non-hodgkins type of lymphoma.

I've had 4 treatments of immunotherapy and I am feeling very good so far. I feel paraneoplastic "syndrome" would pertain to me in this light. I just wasn't sure of what it was and how it pertained as most literature says there has to be a biopsy of the muscle - which didn't really tie into my specific case. TY.

[PMRpro Ambassador in reply to nymima01]

Hmmm - a PCP ignored an enlarged spleen and raised liver function tests in a patient with chronic anaemia? He wouldn't be my PCP now..

[nymima01 in reply to PMRpro]

The PCP did not know my spleen was enlarged. He sent me for blood work in between my usual 6 month check ups to see how my iron levels were doing. The levels were around 8.6 and my other numbers (rbc and WBC counts) were only off a bit. He wanted me to continue to take the iron and see where I would be in 3 months. I am the one who insisted on a hemotologist as I felt I wasn't getting anywhere with bringing my iron levels up to a better level with iron pills alone. My thought process was that I needed more help. ( My ferritin levels were good too at that time). Finally, after seeing the hemotologist and his understanding of PMR and other possible conditions that go along with it, he did the appropriate blood work and other tests to rule out or rule in other possibilities. The hemotologist did the measurement of my spleen and liver and sent me for an abdominal cat scan of everything.

I see an gastroenterologist this week in regards to my liver as the cat scan found portal hypertension in my liver from the inflammation. Who knows what tests I will have to go through with this specialist.