I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running.
My specialists are baffled by this, and I can find no mention of it in any medical literature, which is very strange.
If anyone has had or is experiencing this symptom I would be extremely grateful to hear whether or not you have found a successful treatment, because I haven’t, and have been experiencing this issue for the past three years.
Cheers, Tim
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Hi Tim,I have M F ,I think I will be a lot older than you so I don’t run anywhere!!Iwalk& train my German Shepherd dogs,I am Proff sculptor & artist so when I am not really tired I work in my studio.I have pain everywhere 😢,even sitting my seat bones hurt as much as my legs ,arms ,back……every bone in my body! I take Rux & have injections to boost my blood cells & platelets& have had transfusions.If you can walk & run without breathlessness & pain You are doing very well.Long may it continue for you. Very Best to you,keep going !!😊
Hi Inca, thanks, and sorry to hear about your terrible pain. I think you misunderstood me…. I experience pain whilst walking and more rapidly if I run across the road. I also experience breathlessness with exercise. Thanks, and I hope you find relief for your pain while makes mine pale by comparison.
I had visions of you running marathons! The breathlessness is a nuisance,I have inhalers that help,I just stop & rest when it’s bad,breathing exercises are the best help & Qi Gong exercises.Sorry I misunderstood🫢Sally
Hi Sally, sorry to hear about that… I didn’t. I also get breathlessness but it stops when I stop exercising like you. I do Tai Chi and Pilates but they don’t help my pain…I just keep doing as much exercise as I can manage to keep as fit as my muscles can stand, No worries, good luck, Tim
I believe you are taking Jakafi. Musculoskeletal pain is a known adverse effect. My PCP says "The simplest explanation is the best explanation." Suggest reviewing this with your MPN care team.
Hi Hunter, many thanks but mine is not muscular skeletal pain, purely muscle pain. Have been there with my specialists, and all I have ascertained from them is that myelofibrosis is an inflammatory condition, so it is not surprising that my quads are tender all the time. Cheers.
It is true that MPNs are inflammatory conditions. This could also be the issue. I experience this myself. I m treating systemic inflammation as part of y treatment plan. I use curcumin, L-Glutathione, and a Pro-resolving Mediator. It really helps.
Hi Hunter, thanks so much for your help on this…..you are the first person who has been able to offer any suggestions as to the treatment for my muscle pain apart from a specialist who prescribed me Clopidogrel, which does work to some extent. Please tell me the dosages that work for you for those 3 medications and how long it took for them to give some relief. I will get back to you after I’ve tried them. Again thanks again, cheers, Tim
Bear in mind that the formulation for each of these medications can affect the appropriate dose. The single most effective agent has been curcumin, which took a couple of weeks to have impact. I take:
Turmeric Curcumin - CurcuWIN 550mg bid (Spring Valley brand )
L-Glutathione 250mg qd
SPM Active 1 cap bid
I recommend consulting with an Integrative or Functional Medicine doctor about the use of complementary health interventions.
Hi Hunter, thanks so much, I have been taking that dose of turmeric for months now without any noticeable benefit. Will try adding the other two and see what happens. Cheers, Tim
hi Tim I haven’t got MF but have recently been diagnosed with PV afte 27 years of having ET. I Do get pains in my large bones and my shoulders - I have read this is quite normal. I have to take paracetamol .
Hi Nerjalover, sorry to hear that. Luckily I don’t experience pain in my large bones and shoulders, and yes, I’ve also read that this is common for all MPNs including MF. All the best, cheers, Tim
I am on Besremi, which is similar. All meds cause changes in the body including nutrient depletion. The days after my injection I have joint stiffness, soar muscles when doing steps, although I can climb 300 steps with no problem the week before I take my injection.
I make sure to take a really good magnesium supplement with 7-9 different Mg in it, daily , CoQ10 100 mg daily (also an top source Kaneka CoQ10 and Acetyl L-Carnitin 500mg 1-4 a day depending on amount of physical activity. Helps the brain too!
Interferon alpha causes brain inflammation (many studies prove it. It also caused Liver and kidney problems. It’s important to support these also. gut support and an anti inflammatory diet are keys. I do all this to be able to take my med, which do work, but still remain strong and cognitive. A well balanced system is key.
The above suggestions are what I do and in the right amounts don’t do any harm, but can really help. Since we are all different, your body might need different amounts or different supplements.
Important is to have a good natural or functional medical doctor to check you out. The conventional doctors only prescribe chemicals, which we sometimes unfortunately need. 🙂
Hi Anag, thanks very much for your suggestions, much appreciated. My muscle pain is indeed hugely reduced by my main drug Jakavi, not made worse, so there is something else going on here. I am taking a lot of vitamins but want to stay on the conventional doctor route at this time thanks. All the best Tim
I’m interested to read this and looking closely at the suggestions. I have noticed considerable quads weakness and I get muscle tics too. Left side is worse than the right. I put some of it down to living in a bungalow and not using stairs frequently but I also have Azacitidine (chemo drug) added to the mix. I’m certainly no runner at 74!
I hope you are able to resolve this soon. Best wishes, Jan
Hi Jan, many thanks but It doesn’t sound like the same problem as I don’t have weakness, rather pain proportional to increased muscle use. It sounds as though you need to do more exercise to build up your muscle strength.
I am no “runner” now Jan, but manage a quick dart across a road if I need to.
I had the same problem (right thigh) for a while. At times so bad (after walking 8/9 holes on golf course!) that I can hardly walk. It is more a burning/painful experience. I was always under the impression it's the cutanious nerve (pinching?). I have mf diagnosed 6 months ago and is using hydrea. I will definately ask my specialis (see him next month) what he thinks! Will let you know.
Hi Riet, many thanks, and sorry to hear about your problem. My pain is identical in both legs but subsides when I stop for a minute or so. It sounds like yours may be nerve pain but the burning sensation certainly sounds very similar to my pain which seems to fit the description of lactic acidosis which is what runners call it. I use a cart for golf now….no way could I walk any more. Good luck, Tim
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