Everything was going ok until my blood test last week. My numbers for crp and esr were good but I now have Lymphomatitis. I am having another blood test in 3 weeks which will find how advanced it is.
I want to try natural herbal remedies so am looking for any advice that anyone can share? As of Sunday I am now down to 4mg preds and still having weekly actemra injections.
Hi shazstep, I am sorry to hear that. There are two lymphoma forums on HU so you may be better doubling up and asking this question there too. Hope you get on OK. 🌻
I'm sorry about your diagnosis.
I would strongly favor medical treatment by medical professionals, supplemented by outside treatments, with the approval of the medical experts.
Lymphoma is not something to trifle with, and just because it's natural doesn't mean it's either efficacious or harmless.
Thanks for the advice, however I would never change anything without discussions with my gp. I went to the library yesterday and got 1/2 doz books to start researching + have been looking on the internet. I want to be as fully informed as possible.
That is very sensible.
There are a number of remedies - especially for treatment side effects - that can be quite good, but you have to make sure they are compatible both with your course of treatment and with your condition.
It is wise to be informed and it is wise to be cautious. Get the best advice you can from as many sources as you can.
Wishing you the best on this journey...
So sorry to hear that.
What type is it? PMR and lymphoma can sometimes be confused - it should be part of the differential diagnosis.
I thought I remembered it was one of the main dd before. When I started developing many lumps in my thighs I did worry about my dx. The dr seems to think just lipoma.
Sorry to hear about this. I know very little about it and couldn’t find Lymphomatitis on google. Keep us posted.
Hi shazstep. I don’t know if it’s a similar thing but I was diagnosed with lymphocytosis 1year or so before my pmr diagnosis. 18 months later it turned into CLL Leukaemia. On reading their info it says it’s not unusual for people with CLL to have another autoimmune complaint running along side. Are they mentioning watch and wait for you. Or is it straight into treatment?
My main problem is the difficulty in knowing which symptoms belong to which complaint. Do hope you know more soon so you can start getting your head around it. Waiting is always the worst part.
Has anyone been offered the Pneumococcal vaccine?
Has anyone been diagnosed with Temporal Arteritis had the blood test positive the first time , had the biopsy done about 5 days after being 
Has anyone been referred to an Immunologist.
Just been diagnosed with GCA
Acceptance has been the key.
