Firstly I'd like to comment on what a fantastic forum this is and what a group of patient and kind people you all are. I think it is great that people speak from their own experiences.
I am new to the forum and new to my diagnosis - ET / Jak2 +. I suffer a lot with aches and stiffness in my ankles and elbows, especially when I first wake up. I am 40 years old. Reading people's experiences on this forum, it seems quite a lot of people suffer with similar aches, certainly in their feet, so I suppose that these aches could be down to the ET. What I cannot seem to understand, no matter how much I Google, is the science behind why stiffness in your joints can develop if you have a high platelet count? Does anybody know the answer to this please?
Thank you
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Sammyjoes
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Hi Sammyjoes, welcome to the forum. I have started suffering from pain in my knees and to be honest I'm not sure if it's bone or joint pain. The little that I have found out indicates that pain can result from histamines which are produced in excess in people with MPNs. There are others on this forum who are extremely knowledgeable and I'm sure you will get some more comprehensive replies. Best wishes to you, Jennie
Actually it is not the platelet levels that are the problem with the joints, it is the inflammatory cytokines. At the core, MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway caused by the JAK2 mutation does more than drive up hematopoiesis, it also causes your body to produce too many inflammatory cytokines. This increased inflammatory response is thought to be responsible for many of the secondary symptoms people with MPNs experience. There is quite a lot of research out on this. Here are a few resources on this topic. There is lots more on this available.
The good news is that there are some effective interventions for inflammation. I have been using Curcumin supplements for about 4 years to treat osteoarthritis joint pain. I have not needed nor taken an NSAID since I found a bioavailable formulation that works. In fact, the Curcumin formula I take works netter than prescription strength ibuprofen or meloxicam. Dr. Fleischman (above presentation) recommends N-Acetylcysteine as an option. I use L-Glutathione at the recommendation of my Integrative medicine doc (what the NAC increases in your body).
If you choose to look into complimentary health approaches to deal with the inflammation, do be sure to consult with a knowledgeable provider. If something is biologically active enough to help you, it can also hurt you. Supplements can interact with other meds. This is why I consult with an Integrative/Functional Medicine doc as most docs do not know much about complimentary health interventions. I always let all of my providers know about everything I take. Note; almost everything that is anti-inflammatory seems to have some degree of blood thinning effect.
OMG! Really? That explains a lot. I suffer with arthritis and the last few months have been agony. Nothing seems to help much. Specially the pain in my hip and outside my leg and knee. I’m going to look into curcumin. Thank you so much!
If you look into Curcumin, be aware of the importance of finding a bioavailable formula. Turmeric/Curcumin does not pass readily into the bloodstream. The formulation matters. The Integrative Med Doc I see recommends a formulation called CurcuWin. I actually found this at my local WalMart of all places. I use the Spring Valley Brand, Turmeric-Curcumin blend that contains CurcuWin. Currently take 2 caps/2 times a day (550mg bid). There are other formulations that work. Some are liopsomal. Some contain piperine (black pepper extract).
Do be sure to let providers know if you decide to take it. It does have some mild blood thinning effect. Like all things, it is a risk/benefit decision. Note - it has much less risk than NSAIDS, especially if you are taking aspirin or another blood thinner.
Fantastic video on MPN and diet ! As usual you are a wealth of info. Thanks. Definitely will be more diligent in watching my diet as I am starting to get some over all pain especially in my ankles which I think is weird.
Hi, hope you don't mind me jumping in on this thread. I am thinking of trying a supplement to help with symptoms of PV/ET mainly pruritus and fatigue. I have been following a Mediterranean diet for the last month and I believe it has helped so ready to try further intervention. I ran this past an MPN specialist a couple of weeks ago and he said to try whatever I thought would help but introduce one thing at a time, which makes sense. My research has been this forum and talks from Angela Fleischman and other MPN experts, N-Acetylcysteine or curcumin seem to the favourites. However, on looking up these supplements I see they cannot be taken if you take a blood thinner and most of us take aspirin.
I know the logical thing to do is to ask my consultant but the MPN specialist I saw last was a one off for a second opinion and I am back to my haematologist next clinic and he doesn't think my symptoms are due to my blood disorder, in fact he has referred me back to a dermatologist who rang me last week and it's his opinion my itch is caused by the blood disorder.
So my question at last is how can are supplements and meds taken together safely?
I am glad you are aware of the potential for interactions between supplements and medications. If something is biologically active enough to help you, then it can also hurt you (and interact with other meds/supplements). Most things that are anti-inflammatory seem to have at least some degree of blood thinning and potential to potentiate aspirin and other blood thinners. That is why fish oil is contraindicated if you take aspirin. The good news is that curcumin and N-Acetylcysteine appear to have less potential to potentiate the aspirin. I did take the curcumin together with the aspirin and did not see any change in blood thinning. Actually the aspirin itself did make me too prone to hemorrhage, which is why the MPN specialist took me off of it.
I started the curcumin at the recommendation of my rheumatologist. It worked better than meloxicam or ibuprofen. I have not taken a NSAID for over four years since I started taking curcumin. When I decided to try some other complimentary health approaches, my PCP agreed that I should see an Integrative (Functional) Medicine specialist. Most docs just do not have the knowledge base to give good feedback about alternative approaches like supplements and nutritional interventions. They do not know what interacts with what. It is best to get feedback from a knowledgeable provider who is trained in both Western medicine and complimentary health.
To directly answer your question, as far as I know, it is OK to take both curcumin and aspirin at the same time. I strongly suggest only adding one supplement at a time and monitor how you react. With curcumin, you can start at a smaller dose and work your way up to the max dose and see how you react. NAC tends to come in a set dose. It is pretty benign, but I would still add things judiciously. Definitely tell your providers what you are taking, especially your hematology team. It is up to you do do a risk/benefit analysis on what you take. It is your body - your choice and responsibility.
Thank you so much for your prompt and comprehensive response. You have explained it perfectly and I have to say you are becoming my go to oracle for all things MPN. Hope you don't mind if I ask one more question . . .
When you say knowledgeable provider do you mean the pharmacist?
In my experience that would be an Integrative Medicine (aka Functional Medicine) provider. It could be a GP or a pharmacist who has branched out into this area of medicine, but most docs and pharmacists do not develop this area of expertise.
One of my core treatment approaches is to blend the best of Western medicine with complementary health interventions. Regardless of the approach, I always rely on evidence-based treatment and look at the evidence myself. It takes work to do the research, but I want to ensure I make informed decisions. I have a wonderful team of providers who I trust, but I always look at the underlying data and make my own decisions.
The two things you are considering make perfectly good sense. There is data to support the use of curcumin and NAC. If based on your own analysis the risk/benefit profile is favorable, then it is your choice to try this approach and see if it works. If you want additional input, suggest consulting an Integrative/Functional Medicine doc.
Once again thank you. Being in the UK any treatment I get will be on the NHS which I cannot fault and am eternally grateful. I don't actually have a medical team, in fact, I have never discussed my condition with a GP because in our surgery you see whichever doctor is on duty. I see a haematologist to whom I was referred by a dermatologist who I was seeing about pruritus, and have consulted once with a haematologist with a special interest in MPNs . I don't think the NHS would refer for complimentary advice.
I note you say there is no evidence for complimentary medicine but I believe Angela Fleischman is about to start clinical trials with NAC.
I think I started this MPN journey very naive in that all I had to do was do as the doctor says. But that's not possible is it because each of us is unique in all aspects of the disease. However, I am very happy with my treatment and together with the help and advice on the forum (thank you) and access to online specialist talks I am learning how to best manage my condition. However, I need to learn a lot more.
Like you say I need to get all the information together, proceed cautiously, and when I'm ready to introduce a supplement I'll go see our excellent local pharmacist.
I pay out-of-pocket to see the Integrative Medicine doc. Many of them are out-of-network or not covered by many insurance panels in the USA. It is worth the money.
NAC is in clinical trials with Dr. Fleischman and she recommends it based on preliminary data. It does not have a formal clinical indication for MPNs yet. It definitely has solid evidence to support its use as an anti-inflammatory agent. Likewise with curcumin, though there is some evidence specific for benefit in MPNs for that supplement.
Sorry to hear about the doc-in-a-box approach for GP care at your surgery. Ideally a Primary Care Provider would be the lynchpin in coordinating your care when multiple providers are involved. The PCP should be the one doc that always looks at the totality of your case and care needs. The other lynchpin is the patient. We do have to be our own care managers and advocates. We can never be passive recipients of medicine if we wish to receive high-quality care. Educated and assertive patients receive high quality care. Passive patients do not. When I make reference to a care team, it is only a team because I insist that is one. I am the team coordinator. It works.
Hi, I get bad bone and joint pain from the knees down, particularly first thing in the morning. I'm not sure what causes it but it's listed as one of the symptoms of MPNs. I'm ET JAK2 pos and take Hydroxycarbamide and aspirin.
I had seen Angela Fleischman’s videos a while back and thought a lot of what was being discussed made perfect sense esp. in relation to cytokines & inflammation.
It can be hard to understand what effect the inflammation is having on your body and, mind.
I was diagnosed 7yrs ago and had experienced all of the symptoms for years. I have found moderate excercise to be most benefit so far. The big issue is getting over the inertia in the first instance. The cost can be another issue.
It would be a massive boost to have some sort of clinical research into the area as often, your left to disbelieve your symptoms when talking to GP.
Worthwhile persevering with GP and local services, as often self referral for gym, swimming pool, complementary therapies are available for free. (Before lockdown) I’m in Scotland and this is the case but, you have to hustle for it.
Hope you make progress and can find some support. The pain and ache is common but, that’s no reason to accept it without challenge.
Firstly I totally agree with the post from hunter5582.
As well as the presentation/video from Angela Fleischman, can I also suggest presentations/videos by Carolyn Katzin (e.g. 'Nutrition for MPN Patients', 2017) and Robyn Scherber (e.g. 'Nutrition in Myeloproliferative Neoplasms', 2019). Their material gives a thorough scientific explanation of the affect of certain food ingredients on these pesky Cytokines and their role in cell inflammation. The Carolyn Katzin presentation (apparently no video of this but there are some others) is available via pvreporter.com which I find is another good source of information, including material on the NAC/glutathione supplement approach.
I have PV and I've been taking a turmeric (curcumin) supplement for about 4 weeks now along with NAC (but I may switch to Glutathione). I haven't experienced joint pain (apart from dodgy knees but that's due to running) but am feeling 'improved'. I think it's due more to these rather than Hydroxycarbamide which I've been taking for about 2 months (I'm also on low dose Aspirin). I am completely with hunter5582 regarding the whole topic of inflammation and get a sense that the Americans are further down the road with this and MPNs compared to the UK.
Just for good measure I'm also currently investigating James Nestor (breathing) and Wim Hof (breathing and cold water) as there appears to be a good scientific basis for their methods including the impact of cold water showers on Interleukins which are, guess what - Cytokines! Since I started ending a shower with cold water (I'm up to 45secs) I haven't had the itchy skin symptoms that I'd been plagued with.
I think inflammation and diet is an untapped but hugely significant aspect of managing MPNs and merits a much wider audience.
Welcome, I have PV high red blood cell count. My Dr. says it is because of the excess fluid in the body from the extra blood cells I carry around. For my feet the best thing I did was buy a pair of Hoka One shoes the extra comfortable ones, they are pricey, $160 USD but if I have to be up on my feet all day it is like walking on really plush carpet all day long. Also, blood flow through our feet is not as good as the rest of our body, you might try compression socks to help with that. Plus, stay hydrated it is hard to do but the benefits are worth it.
Hello ... I have ET /Jak2 ... diagnosed 2016 ... initially I was just tired .and had head spinning ...plus other symptoms... but on Hydroxycarbomide I could see improvement .. so went from full time work to part time and was coping well ... then came October 2019....I woke up unable to get out of the bed ... my right shoulder and hands were so painful ... this quickly changed to elbows ...ankles /knees the pain was terrible ... I paid to see a private GP ... had no choice .. he said I have rheumatoid arthritis... I discovered on this site ..from Steve ... that people with MPN produce an over production of cytokines, which means inflammation to joints ...but Drs also a rheumatoid Dr I see .. seem to know nothing about this connection... so I have no choice but to take more medication or face damaging my joints .. since on this new medication I am able to cope again ... inflammation much less ... but so frustrated that the professionals don’t seem to know about the MPN condition fully ... I really wish you well and all of us that suffer but we are all brave and will keep going ... who knows , perhaps cure is near .... love & peace for all ... Lainie xxx
Thank you all so much for taking the time to share your experiences and tips. I really feeling like I'm starting to put 2 and 2 altogether. Best wishes to all.
Welcome to the forum. I'm post ET MF. I was diagnosed with ET JAK 2 positive when I was 52, in 2008. I was diagnosed with fibromyalgia in my 30's and arthritis in both my hips and shoulder in my 40's and I've had chronic neck pain for 30 years. When I found this site a couple of years ago, I found out the relationship between inflammatory diseases and MPN's. I always wondered if my doctors had missed something all those years before my ET diagnosis. Cutting down on carbs and sugar definitely helps, and light exercise, like walking and low impact cardio.
May be not related but most evenings I get pain and swelling in thumb joints, wrists or finger joints. The pain is there whether or not I move the joint. It is excruciatingly painful when I have to move the joint. It only happens in the evening and is painfully all night. Its usually gone in the morning, sometimes there some residual stiffness in the morning. I mentioned it to doc and thinks it could be some form of rheumatism and to go get a blood test when it happens. Problem is docs are shut in the evening as are the phlebotomy service and we are currently on 5 weeks to get an appointment for blood tests.
Found this old post. My MPN Dr said my elbow pain is from my exercise (I do mild weightlifting, pull ups etc for 20 years) But no pain till recently. the exercise doesn't affect it and the elbow pain can come and go in minutes and go down the arm outer surface (not bone) .
So we have company in our pains and I assign it to the MPN and inflammation, not the exercise.
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The joint pain is getting beyond bearable
Questions about pegasys please 
ET, Joint Pain, and NAC: Seeking Alternative Solutions
