I have not been on here for a while so just a wee update on what's happening in my life with MF: really not much change still on Hydroxycarbamide my platelet levels are ok had a scan on my spleen that's ok but my symptoms of pain and fatigue mouth ulcers are just as bad as ever 🙃 spoke about changing medication but my haematologist says that ruxolitinib is an option if in future my spleen becomes enlarged . I still think a lot of my symptoms are due to long covid but that's been 16 months since I had covid!!
Can't seem to shake of this low feeling, I am speaking with a Councillor so I will see how I am after a few sessions. I am hoping that something will change as this is not me usually take everything in my stride .
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indy22
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The fatigue and mouth ulcers you are describing are consistent with adverse effects from hydroxycarbamide. Not sure what pain you are experiencing. Note that the fatigue can also be a direct result of the MF. While some people do experience a very long COVID aftermath, I would agree that 16 months is a rather long time for that to be the issue.
You are correct that ruxolitinib is an appropriate consideration. for treating MF. You may find it easier to tolerate. There are other options as well. I am not aware of needing to wait for spleen enlargement to consider the other options when you are having problems tolerating hydroxycarbamide. It is sometimes a matter of being assertive about your preferences in treatment should this be something you wish to pursue.
That is certainly your prerogative. It can be helpful to get a second opinion from a MPN Specialist, particularly if your hematologist does not have this specialization. Just in case you have not seen it, here is a list. mpnforum.com/list-hem./
I agree with Hunter, MF patients do get Rux for reasons other than spleen and on the Voice, many have described relief. Esp if you're not tolerating HU (bad mouth ulcers etc) Rux is well worth discussing further.
I also suffered long covid, right through my MPN Dx period. I got Covid at the very start, early Mar 2020, and I believe it's not all done even today. It could be one source of the malaise I get that is not a classic MPN symptom.
I progressed from ET to MF last year. It seems that there is a score system they use to determine whether they start Ruxolitinib in the UK. Things that counted were : age over 65, symptoms, platelets under 100 etc. You can find the criteria online DIPSS I think it's called. You need to be intermediate 2 or above I think. So on first diagnosis I didn't score highly enough because my platelets were about 120. They quickly dropped to c87 and do I was given rux. They seem tight with it because it is very expensive and the original research only tested against intermediate or higher MF. I don't know what they do if other drugs aren't tolerated
The "aren't tolerated" is a key concept that should get you some action. This should trigger 2nd line therapies, ie what is tried next when the 1st choice is not viable. Rux is 2nd line in some situations.
Hi Indy!Regarding the Ulcers, HU is a drug that’s not even supposed to be held in the hands. Here in Austria, there’s a big warning label in the bottle. Touch only with gloves! For me that means, do not let the capsules sit in your mouth even a split second longer than necessary. Swallow immediately with lots of water. See if this will help with the ulcers.
Regarding the fatigue. I was wiped out by the Covid vaccine which caused leaky veins in my legs, massive iron deficiency and brain problems. All this is medically documented and finally diagnosed just a month ago. My second Pfizer was in July.
Researching, I came upon an amino acid (Acetyll-carnitine) which I’ve been taking daily ever since August. It put life back into my body, since it helps all the cells in my body take up and use the nutrition from my food. One can take up to 3g a day. I started at 1,000mg, day by day went up to 2,500mg (5 capsules). Eventually, I needed less and less. I am stable on 1,000mg a day. There are no side effects, except energy! I also take 100mg of a good CoQ10 supplement. If I don’t take these, I’m not as strong. The AlCar also stopped the heart palpitations that were caused for years now from my Anagrelide!!!
In the meantime, two friends in their 60s and one 72, had Covid and could hardly drag themselves for months. They are now up and going with Acetyl L-Carnitine. Important not to take this after 5pm. You’ll have trouble sleeping. It’s a supplement that has also been given to dementia patients for 2 years in a study I read. Helped the patients regain strength and a clearer mind. This can be taken for a long time according to my holistic doctor.
I don’t have MF, so I don’t know, but why can’t the doctor give you Anagrelide? I know that it’s more expensive, perhaps the insurance doesn’t want to pay for it. I just know that when I am not well, I fight for my right to a better treatment. I changed 5 haematologists until I found one who cared and listened and helped me. Don’t just sit around and suffer if there are solutions.
I was given HU for a change and I had strong mental distress and stopped after three days. My coordination was off (arms and legs) had no idea where I was going. Scary it was.
Thanks for the details. Agree on the HU label, I call them "poison pills" even as it is considered a "mild" chemo. It did work great for my blood counts. I'm on Besremi now.
That's a good result on the ALC. I like to test one supp at a time, I might try the curcumin next that Hunter has good results, and ALC after that if curc doesn't work out. My thought is ALC is closer to NAC in concept, while curc is a totally different solution. But your note on palpitations is interesting, I'm all for a fix on that.
I don't have a classic fatigue issues, more vague malaise, full headed "bad days". I'm up for testing any supp that looks promising, and I'll keep at it.
CoQ10 I've read affects PLT, I took it before my Dx but after Covid, with no obvious changes. I stopped from worries about the PLT influence. Has your Dr discussed this one?
My definition of a really good supp is one that gets me a full month of decent days.
I did NAC. It really triggers your glutathione levels. Careful when you’re take that, it can wipe out your meds. Find out how long your meds work in your body. Didnt do much for energy; just detox.
Curcuma thins blood. I take 100mg aspirin. When I take Curcuma, I reduce to 50mg.
CoQ10. Is for me standard. I’ve been taking thst for 4 years. Strengthens our mitochondria in all our cells. You can start at 25mg daily and then maybe 2ce a day. I’m at 100mg daily. I need it.
Since I had an accident last year, my body was useless for about 3 months. Then the disaster with the Pfizer. I didn’t exercise for 3-4 year. At 56, I lost soooo much muscle. Well the ALCAR allowed me to go on walks. I took 1g right before the walk or training. 3 hours later I was Weak again. Then I took two again and got through my day. It helped me build up muscle while giving my adrenal and thyroid a break. No cramps. 😁😁
Hi indy sorry your going through a rough patch MPMs are a challenge. I still find my self reeling from one state to another and the wether at the moment is not helping as its really grim up in Yorkshire today. I found CBT from community health a 6 weeks course really helpful it helped life my mood and l can have another course of 6 if l should need too.
Self care is so important so a little bit of what you fancy can be really good for you,take care and stay plugged in its hard l know especially when going through a rough patch,but it good to know this chat room is there for all struggling with MPNs. Take careAdiewon
As others have said the mouth ulcers often come from Hydroxy and fatigue is a common MF symptom as it is for PV and ET but usually more pronounced in MF, you don’t say what kind of pain you have, bone pain is often MPN related. MF patients who go on Rux often report better energy, less bone pain and likely those nasty mouth ulcers would go, it may be worth considering it, Rux can stop working for some after about 3 years for MF but there are other newer MF drugs around now and more in pipeline. Most people feel much better on Rux for MF, as somebody else mentioned it is expensive so maybe not prescribed as much as we would like. I take it for PV and am doing well with no sides.
That's great glad it is working for you and I am definitely going to give it a try , I would give anything else a try if there is a chance it will make me feel better than I do now . Thank you for your reply 💙
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