@Erica @ChrissyD Polymyalgia rheumatica.
Having a bad time at present. A problem I thought was arthritis as did my GP could be a disease called Polymyalgia rheumatica. The pain varies between moderate to excruciating. It started in both shoulders, then hips and neck.
Had physio which has not been effective. Anyway I thought at 73 and having had a very physical life it is arthritis. As soon as I mentioned similar pains in hips and neck my GP said it could be a disease called Polymyalgia and sent me immediately for another blood test and x. ray of hips. One of the tests showed a raised Gamma globulins level which was borderline but no evidence of myloma!! They suggested it is a polyclonal rise in immunoglobulins which can show in several states including infection, inflammation, and liver disease. It is a disease of unknown cause but could be linked to a autoimmune disease. The x. ray results haven’t been returned yet and that could clinch diagnosis. Perhaps Rheumatoid arthritis? A bit surprised when myloma was mentioned but no mention of Chronic myelomonocytic leukaemia (CMML). I was hoping perhaps other Chronic myelomonocytic leukaemia (CMML) patients have had similar issues and know the answer. I believe it is perhaps the onset of rheumatoid arthritis as I have also started symptoms in some joints in both hands. I am finding it quite difficult to drive any distance due to the pain issue in the rear of my right thigh. I would really appreciate any replies from Chronic myelomonocytic leukaemia (CMML) patients who have had similar symptoms and have got to the bottom of it. On the plus side my blood test at haematology was stable. My monocytes level has improved but platelets were slightly down to 53. I don’t think my problem is a Chronic myelomonocytic leukaemia (CMML) issue but who knows.
Hope everyone is ok
Best wishes to all
Unclejack.
Hi @Unclejack.
That’s sounds really miserable and very painful. It must be really hard to find movement so difficult, especially when you have always been so active.
I’m sure you will get some replies from other forum members who will be able to share their experiences.
Have your medical team discussed any treatment that might help or are they waiting for your xray results?
Please keep us updated and take good care of yourself 
Oh I am sorry to hear that you are in so much pain @Unclejack.
You demonstrate so clearly what complex beings we are, and I believe many of my conditions are interconnected.
I am afraid it is a waiting game and as we know the waiting and the not knowing are
the hardest times…
Please do let us know how you are and what is transpiring. I will be thinking about you.
Hello @Unclejack sorry to hear about your bone and muscle pains- you have my empathy as I know it’s not nice at all 
I am a different chronic blood cancer Myeloproliferative neoplasms (MPN) - Essential thrombocythemia (ET) - but have had in recent years autoimmune problems with just as you inflammatory arthritis as one of the things to deal with from it - hopefully your GP should soon refer you to rheumatology at your local hospital (unfortunately usually quite a wait for an appointment 
) who specialise in all the autoimmune conditions, they will run all the blood tests to identify any of the conditions you may have, there are quite a few, and they all have inflammatory arthritis effects - the positive is that once identified there are many very helpful treatment meds to assist, slow it all down (as the pain comes from a hyper active immune system attacking joints etc rather than just infection!) and that makes a huge difference so there is assistance - I was diagnosed in this way a few years ago and find benefit from the meds available. It seems these autoimmune conditions can tally with chronic blood cancers. Do hope you get some help soon - in the meantime the charity Versus Arthritis has a lot of helpful info on inflammatory arthritis conditions with good tips etc too - all the best
@Erica @Nichola75 @Jilly20
Thanks so much for your support. I have not received my x.ray results yet. But apparently steroids are very effective in controlling this strange disease and it’s pain. I mentioned this what I thought was arthritis to haematology the doctor thought it was arthritis. I had x-rays on my shoulders a few weeks ago, before the pain spread to my neck hips and hands and a bone spur and arthritis were identified in the right shoulder. The left shoulder had arthritis and calcification in the tendons.
I am very fortunate in having really excellent GPs. The crazy thing about all this is my wife had the same problem starting the same week last autumn as me. She has had X rays which revealed nothing and has a ultrasound scan next week. As my blood test is still better than a year ago I am hoping this is not linked to my Chronic myelomonocytic leukaemia (CMML).
Another worry is the fact that PMR can also effect the eyes. I feel well in myself and bloods are stable and still on watch and wait. Another strange thing I have experienced. Although I have neutropenia and thrombocytopenia and am vulnerable I don’t seem to pick up any infections!
Hopefully that situation will carry on. To be honest I cannot remember a time when I have had such a cold free period.
Perhaps my crazy diet could be having a effect on my immune system.
Anyway best wishes to all stay well
Unclejack.
P.S. the mention of no evidence of melanoma at one raised level in my blood was a bit shocking. I know Chronic myelomonocytic leukaemia (CMML) can progress to Acute myeloid leukaemia (AML). Although the test went on to say that infection, inflammation, and liver disease is the likely cause of this blood level.
Thanks for the update, your GP’s seem really on the ball.
You and your wife really seem to be going through it.
Still no x ray results, well do let us know when you do get the results.
Again you show what unique, complex and interconnected beings we are
Great that you have no evidence of Melanoma
Please do keep us posted and really look after yourselves
@Erica
Hi Erica yes my GPs are very good they really do look after me. I read many posts on the forum and compared to many other blood cancer patients so far I realise I am very lucky up to now. It’s just over one year since diagnosis and probably I had it 18 months before diagnosis. And I have had only a few very minor hiccups in that time. Last blood test still only five abnormalities. Even better monocytes have come down neutrophils recovered a little. I think even mentioning blood cancer people assume you haven’t got much time left but as you and Chrissy D have proved that is not always the case. I am very positive and my crazy diet as a new addition MARMITE! A spoonful every day. GP checked my Vit D levels and they are 100 which is quite good. To help it I I have 15 minutes in the sun without sunscreen and then put some on. Always were a cap and sunglasses though. I had a strange patch on the side of my scalp dermatology sprayed some cryogenic stuff on it but it came back GP prescribed fluoricil cream and it has cleared.Anyway hope you are still well and all our comrades.
Best wishes unclejack.
Hi @Unclejack and all. My Mum had Polymyalgia rheumatica many years ago. Really painful and she couldn’t even raise her arm above her shoulder to brush her hair. There are a couple of blood tests which are usually done to confirm it. Here’s the NHS link to info. Polymyalgia rheumatica - Diagnosis - NHS.
You’re right about the risk to your eyes and steroids are the usual treatment which help avoid any eye problems. There is a similar condition which affects the eyes and I do know if somebody who did lose the sight in one eye as she was not diagnosed and treated early enough! So keep pushing! My mother also had to take medication to prevent osteoporosis which may be caused by the steroid treatment! Let’s hope you get a diagnosis soon!
Meanwhile, good to know you’re keeping well and staying clear if infections! You must be doing something right! 
@Chrissy D
Morning Chrissy thanks for your advice, and great to hear from you. Quite honestly I think it is rheumatoid arthritis. Looked back through my blood tests on the NHS app test results. In 2022 they showed Rheumatoid factor borderline. As you say the pain can be horrendous. Dressing in a morning is horrendous. My wife has the same symptoms exactly. We have to help each other to dress and it seems inexplicable. She has had her knees and shoulders x. rayed and has ultrasound exam this coming Tuesday.
I’ll keep you posted on the outcomes.
Best wishes unclejack.
Yes, @Unclejack please do keep us posted about both of you, be kind to yourselves, horrendous pain is so debilitating.
Take care of yourselves
@ChrissyD @Erica @Jilly20 @Nichola75
Hi everyone I have just been reading a important Vit D study and the immune system. Perhaps we all should consult our GPs or haematologist and ask for a VitD test to check our Vit D levels. What attracted my interest was the crucial role in ONCOGENESIS, immune response and metabolism. The oncogenesis bit was of great interest as that apparently means the destruction of cancer cells. We in the north hemisphere are very vulnerable to lack of sun which is apparently crucial to maintaining VitD levels. My GP has tested mine and it is satisfactory at 100. BUT Vit D levels are not part of usual blood tests in the UK. And it is difficult to increase vit.d by diet alone. MY GP WAS QUITE HAPPY TO TEST MY VIT D WHEN I ASKED. In fact she also gave some sound advice. I checked out all the foods with a decent vit D content and added them to my diet. Apparently every cell has a Vit D receptor so that indicates how important it is. I think it’s worth a word with the medics to get tested and they can advise.
Hope my comment doesn’t upset anyone.
I just think info can be so important.
Best wishes unclejack. Stay well.
You are so right @Unclejack Vitamin D is so vital for us - fortunately my Myeloproliferative neoplasms (MPN) consultant adds it in every so many months as an additional with my blood counts checks and I am often low so am on a permanent supplement - so you are sharing good advice 
@Jilly20
Morning thanks for your reply. The whole country should be regularly checked for Vit D levels. It’s actually a hormone and is fat soluble so should be taken with a meal that has a fat content. I have found out that the recommended strength was to combat rickets in the 1920s. And should be reviewed. The benefits for our immune system are massive. The problem is it is of little interest to big pharma as it is cheap and the mega profits they demand are not available. As for myself as I may have said before, although I have Chronic myelomonocytic leukaemia (CMML) causing neutropenia and thrombocytopenia I don’t seem to get colds, cold sores mouth ulcers and the like. I did have a mild cold before Christmas and out of curiosity took two COVID tests both of which were negative. I use public transport all the time and don’t wear a mask. If requested I would wear a mask out of respect for others.
I honestly put my current good health down to Vit D3. I am on watch and wait. I have found the NHS app with blood test records invaluable. My symptoms started late 2021 and diagnosis came after a bone marrow test in May 2023.
10 abnormalities in my blood at that time. I changed my diet completely and my GP and Haematologist agreed on using Vit D supplements. For the last 7 months the abnormalities in my blood have declined to 5. Maybe coincidental but who knows. As for the suspected PMR at present I can find no link to leukaemia. Hopefully it’s just arthritis. I am totally obsessed with fighting this battle and firmly believe if we stopped eating rubbish that could improve cancer outcomes in general. Were I can I eat organic. The poisons that’s sprayed on some foods is incredible.
Anyway should get my test results in the next week which should confirm whether I have PMR.
Very best wishes
Unclejack.
@Erica @ChrissyD @Nichola75 @Jilly20
Hi all.
I need some advice or experience. Like many in our position I have low platelets (thrombocytopenia). I have been studying the effects of various foods and platelet levels. I found out that pomegranates can react with statins and are not recommended. Now the question. I have very low cholesterol (2). As I am taking 40mg atorvastin daily I asked my GP if these were necessary she contacted Haematology who advised to keep taking them.
I have just read on the NHS website that a common side effect of statins is low platelets!
I realise that this is a medical question and none of us are qualified but do you know anyone with low platelets who are taking statins? Perhaps my suspected PMR symptoms are linked to statins? As I have already asked my GP and Haematology I have nobody else to go to. I am extremely worried that I am making a bad situation worse taking these statins especially with my cholesterol so low at 2.
Best wishes
Unclejack.
Hi @Uncle Jack and others
I hope you soon get a definitive diagnosis for your suspected PMR -though it seems to be yet another of these diseases for which there is no reliable test for 100% confirming - so diagnosis is made by ruling out other things! So not very helpful.
The NHS website lists known side effects from statins, one of which is muscle pains and a more serious (and possibly irreversible) muscle damage
Other research does indeed confirm anti-platelet responses with statin use.
I have read of something which NHS clinicians should be using as a tool to discuss with patients when starting or continuing with a drug treatment. The acronym is BRAN which stands for Benefits (what are the benefits of this medication?) R= Risks (what are the likely/possible risks/side effects? A= what are the alternatives? N=What if I do nothing? NHS England » How to use a decision support tool I think you alone can weigh this up and decide whether to stop the statin and see what happens vs any risks associated with your cholesterol possibly going up - though I have to say that I have read that there are some who feel that the benefits of statins are over-hyped and that the initial study showing the benefits was flawed! After watching Dopesick about the Oxycontin scandal on the TV recently, I’m afraid I have become even more cynical about the activities of pharmaceutical companies in their pursuit of even larger profits. But that is just a personal opinion and, at the end of the day, it is your prerogative to take or not take medication!
Good luck with your research and decision-making!
Hi @Unclejack.
I definitely wouldn’t like to comment, as as you say, it is a medical questions. However, I can see @ChrissyD has shared some useful links which I hope help as I can hear in your past how worried you are. It’s tough weighing up the pros and cons of medication isn’t it so it’s important to get all of the information you can and to ask any questions you have.
Perhaps go back to your GP again with your questions? They seem like they are on the ball and making checks with your medical team.
I have also copied in the @BloodCancerUK_Nurses
Please let us know how you get on
@ChrissyD
Thanks so much for your response. I couldn’t agree more with your remarks. Especially about big pharma. My GP was quite sympathetic to my concerns about taking statins with what she herself said was the lowest cholesterol result she had ever seen in practice. The more I research the more shocks and surprises I come across! In fact I research every medication through reputable websites I am recommended to take. How I missed statin side effects and platelets I really don’t know. I also came across research that explained how important cholesterol was to cells etc. I stopped having eggs and full fat milk on the back of the dangers of cholesterol! I now have a half dozen organic eggs to myself every week, and other foods the scientists labelled lethal and my cholesterol level seems to go lower not higher. My haematologist said that the Chronic myelomonocytic leukaemia (CMML) was responsible for the low cholesterol?
Thanks again for your response
Best wishes
Unclejack
Hi @Unclejack
Are you saying that your cholesterol level was 2 BEFORE you were prescribed statins?! If so, what is the medical rationale for that, as my understanding is that it has to be 5.5 with an appropriate ratio between total cholesterol and HDL cholesterol before statins are indicated? You seem to suggest that your GP was “sympathetic” as you had such a low level? So why prescribe?
Out of interest I also have a cholesterol count if 2.2 but, as to your haematologist’s suggestion that Chronic myelomonocytic leukaemia (CMML) is the cause, I can only say that my cholesterol levels were that low 3 decades before I developed Chronic myelomonocytic leukaemia (CMML)! I really do wonder about the complete nonsense that some of us are told by people who should know better! 
Sorry for the rant but my husband’s cousin is currently on a complete merry-go-round if statins and blood pressure medications which are giving him horrid side effects for which the solutions are always more and more drugs to treat the side effects!! I’m getting a little frustrated by it all! 
@ChrissyD
Hi , my cholesterol level was 3.8 to 4.2 before statins. In 2021 I had a blinding migraine with aura so much so I attended A.E. I had suffered such migraines since I was 19. After 11 hours in A and E I was given a brain scan. Nothing was amiss and a migraine was diagnosed. Anyway I was referred to the stroke clinic 3 days later! The doctor reviewed the CT scan and said I had suffered a Tia. Even though my level was 3.8 I was put on statins and aspirin and clopidogrel but the statins were permanent as was the clopidogrel .Later I was requested to have a MRI scan. This revealed some minor damage that was not related to the recent incident as it was much older. Everything fine until thrombocytopenia struck in early 2022. Blood tests like a roller coaster. I developed tiny specks of blood on my lower legs. At this time Haematology removed the clopidogrel as they said no chance of blood clots as platelets so low. I then had a bone marrow biopsy which revealed the Chronic myelomonocytic leukaemia (CMML). After clopidogrel was stopped the specks of blood disappeared.
My GP didn’t prescribe statins the stroke clinic prescribed them and clopidogrel.My cholesterol had always been fine. In fact up until that time I had always refused statins as my cholesterol was low. I didn’t smoke or eat junk food and worked out every day BUT a previous GP said NICE guidelines said I should be taking statins.
I still refused, and I asked him if he took statins, he said he would never take them! That’s the full story Chrissy. Low platelets started this journey and took about 18 months of tests to reach a diagnosis of Chronic myelomonocytic leukaemia (CMML).
Best wishes unclejack.
@Nichola75
Hi Nichola, thanks for your reply. I think we are extremely lucky to have a fellow Chronic myelomonocytic leukaemia (CMML) patient who has huge knowledge and experiences of this type of blood cancer. As Chrissy said she had low cholesterol many many years before being diagnosed with Chronic myelomonocytic leukaemia (CMML). I have not come across a link between Chronic myelomonocytic leukaemia (CMML) and low cholesterol, but I will rummage through the websites to check it out. I am glad I am retired because the time I have spent researching and looking for answers is basically 24/7! My wife says I have that obsessional disorder! Strangely I find it all unbelievably interesting and a challenge.
Admittedly studying the disease is one thing suffering it is a totally different matter.
Anyway Nichola thanks for your response
Best wishes unclejack.