I am ET Jak2+ and on Hydroxyurea 1000mg 5x/week and 500 mg on the weekends; my platelets hover at about 560. I have had bursitis in my left hip and piriformis syndrome on same side and nerve pain down the side of my leg to the knee since July. I have tried chiropractic and although helped lessen the pain I continue to suffer. When I change position from sitting to standing I hobble for the first ten steps. The chiropractor suggested I try red light therapy to reduce the inflammation since it is not recommended we use NSAIDS. Does anyone have experience with this therapy? I read it is not recommended for those on photosensitive medications which Hydroxyurea is. Any thoughts out there?
Thank you,
mbr8076
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mbr8076
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I would suggest consulting with an Integrative or Functional Medicine doctor regarding your question. These doctors approach medicine from a different more holistic fashion. they are also more knowledgeable about complementary health interventions. My Integrative/Functional Medicine doctor has been very helpful in helping to manage the systemic inflammation associated with the MPN. She prescribed a combination of curcumin, L-Glutathione, and a Proresolving Mediator. It makes a huge difference in managing the arthritis-tendonitis-fascitis.
Note that anything biologically active enough to help you can also hurt you and interact with things. Just because something is "natural" does not mean that it is safe. It is best to get expert medical advice on these interventions.
Here are two lists of Integrative and functional medicine providers.
I haven't had the light therapy but did have very unpleasant bursitis in my hip while on HU. I remember the pain and difficulty walking. My GP sent me to a physiotherapist ( I believe they are called physical therapists in the US). She was very helpful and the right exercises did the trick. I did have to work hard at them between appointments but it was worth it to get rid of the pain. Might be worth considering?
This past year I was symptomatic for ET, but hadn't yet been diagnosed or treated. I had bursitis, 2 gluteal tears and piriformis syndrome. While months of physical therapy helped to some extent, pain persisted in my case. I eventually relented and had a steroid injection in my hip, and combined with physical therapy, it made a big difference the past 3 months. Still, I'd be interested to learn what you discover about red light therapy. I haven't yet met with my functional med physician since my ET dx last month, but hope to ask her.
The chiropractor did mention the steroid injection but also stated it is usually temporary:/ I am happy you have relief! I may be going down that road in a few months if find no help with PT. She also mentioned acupuncture but am deferring to the PT for the moment since do not want to mix too many modalities
helloooooooooo I have only used it on my face, but may I just say, it was encouraging reading your symptoms, and knowing someone else experiences the same!! Big love xx
Definitely speak to your specialist but I am on hydroxicarbimide at the moment and use red light therapy on my back and neck after a car accident last February but also a sudden increase in platelets again, relieved to say nothing had progressed but had a few months after and felt awful and my nervous system was a wreck - I asked my specialist and also the company who I bought from who are really helpful and was told by both it does not increase skin cancer risk by being on the medication, with the red light I am also just using on the area that has been injured and not full body. The clinician who did my last bone marrow biopsy also suggested the red light therapy. I have also just bought an infrared sauna to use 3/4 times a week - I’ve started low and slow but this is really beneficial for aches and pains, for energy and also slow detox for liver and gall bladder which have been concerning me lately due to digestion issues with peri menopause and diagnosed with gall bladder sludge - I have to say using both therapies are helping me (I use them on alternate days) and had great blood results yesterday - I think with everything if you do try start with minimum amount suggested and build up slowly / the company I used had a 60 day money back guarantee if you did change your mind or not feel comfortable using. I also have acupuncture every 1-2 weeks which helps with my overall well being. I was told not to try any supplements apart from what the NHS can offer ie vitamin d for example when looking at certain ones for pain and to gain through food so I also make myself a fresh turmeric golden latte with coconut milk and a dash of black pepper for example as I know turmeric is really good for inflammation but only if you activate with black pepper. Really comforting drink especially in the winter. My consultant had said the main reason for supplementation is that they haven’t got the research in place but also concerned that certain ones would also increase my platelet count. Hopefully more research is going into this as do hear ones like what hunter suggested can be really beneficial. I have cut down on as much sugar as possible and eat cleaner and remove ultra processed foods. I would say I’m 90% there and taken nearly a year to feel stronger and have the energy I now have but all made a big difference. However I need to knock the Starbucks hot chocolates on the head which is proving difficult on a weekend 😆
Hope this helps and happy to chat further if you want any more info
Thank you for such a helpful reply Sorry to hear about your accident I am glad it is helping with your pain. I feel more confident in the usefulness of this treatment for those of us with MPN's.
I was reluctant about using turmeric because of the blood thinning properties since I am on aspirin daily. I will research more.
Oh, how I would love a hot cocoa; I am lactose intolerant so have not had one in years. I just need to make it with almond milk, cacao powder and a little stevia but probably not as creamy
Reach out any time and happy to help. Like you I’m on aspirin but on it every other day and the day I am not make myself a tumeric latte - I think using generic from fresh or a good paste from Holland and Barrett it’s less of a worry for the blood thinning as it’s not a high dose supplement so defo give it a try - I’ve never had any issues fingers crossed
I’ve been looking at the ceremonial cocoa stuff that’s trending a lot at the moment as a lot of really benefits for the gut and microbiome so am thinking of trying to swap over - I predominantly use coconut milk now but those sneaky weekend trips to Starbucks get the better of me with dairy!!! I also take certain prebiotic's and probiotics which are helping my overall health too - take care and here to chat anytime
Love your post and some of the healthy initiatives you share. If you want a healthier alternative for your choc fix i highly recommend ceremonial cacao, the raw bean not heavily processed, full of nutrients inc magnesium, and phytonutrients that you take with plant milk and/or water. Its also a wonderful carrier for anti inflamm spices and mushroom powders too. I'd highly recommend it for its heart opening and anti depressant qualities too as part of your holistic wellbeing kit - blessings to you xxx
Hi. I’m ET Jak2 patient. I’ve been using infrared sauna therapy for the past few months ( feels really good especially as it’s so cold where I live). The therapy provides relief of muscle aches and I also feel a sense of cleansing from all the meds I have to take. I do want to say that before I began taking Jakafi, I had experienced the symptoms you describe. Hip bursitis, standing up became difficult, first few steps I wobbled, I felt very debilitated. I’m 59, and have been active my whole life. Eat healthy, etc. I am intolerant to HU, so I was prescribed Rux. This has significantly helped my pain. I no longer have any of the hip/ side of leg pain, my lightheaded/dizzyness is gone, and my headaches reduced by 90%. I am still very fatigued. But the other symptoms have improved. My MPN specialist did not believe the infrared sauna therapy would be harmful. But do seek advice from yours. Everyone’s symptoms or risks are different. Good luck. I know that I am lucky to be on Jakafi, for ET. As for me it has been a positive treatment.
I did not even think about ET or Hydroxyurea being the cause of this hip/buttock pain because I have a degenerative spine and thought the month spent with my smaller grandchildren with all the picking up and twists and turns was the culprit I feel very debilitated as you stated with that hobbling:/ In the past, I have gone gluten, dairy and sugar free and felt a considerable difference in joint pain and overall well being but found it unfortunately unsustainable:/ I am able to go without sugar than gluten and since I am lactose intolerant that is not a problem either. It is the gluten that I have trouble doing without! The gluten free options are not palatable to me: I would rather have lettuce as a bun But, I believe I must take that route again for my well being. I am embarrassed by my hobbling and grunts and groans😩
I also tried gluten free and found all the alternatives unpalatable but I have now got used to not having breads as well as no sugar. Really enjoy fresh fruit and I believe it’s possible to get used to anything with a little determination especially when it makes you feel better.
Also we invested in a red light sauna and it definitely helps - use it 3 times per week. Good luck getting used to sugar-free…
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I am glad it is helping with your pain. I feel more confident in the usefulness of this treatment for those of us with MPN's.
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