68 yo F, with ET , Jak2 mutation, on interferon 45ug every 10 days. I have only been this fatigued once before and I had pneumonia. It definitely started when I went on interferon. I am in hematological remission so don't want to stop.
Do any of you on interferon every 2 weeks find that it made a difference with respect to fatigue symptoms to reduce frequency by this small amount (every 10 days to every 14)?
Second question is regarding being stiff and sore throughout my body all day every day. Have tried NAC, quality curcumin, boron, boswellia, CBD, gabapentin, SPM. All quality supplements at reasonable doses for 2 months or longer with absolutely no difference. The symptom started at night about a year before diagnosis with MPN in 2020 but has steadily increased. My CRP is normal and I have osteoarthritis. My BMI is within range and I eat a fresh mainly local/organic diet.
The only thing that does help is ibuprofen but because of aspirin and possible effect on kidneys (they are fine now) I take it only every once in a while when I really have to do something.
Is there something that treats the inflammation? I really believe the soreness is MPN related as previously I did not experience all over body pain like this. I find my daily activities taking care of house and gardens to be almost impossible, and what is worse, no fun at all.
I have an appointment with my MPN specialist in 2 weeks so this is in preparation as I wish to focus on QoL now my blood is within range.
Thank you.
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Planti
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I got physically weaker upon starting IFN (Besremi). Otherwise I've generally had malaise more than fatigue since Dx.
We know that IFN's side effects are often dose dependent, whether by changing dose interval or dose size. On your hematological remission (CHR) it seems you have some room to reduce dose and still have CHR, is that right? My Dr wants to go the other way (keep increasing)
On the supplements, some of us are also taking NAC and Curc. These are supposed to reduce inflam, but real clinical data is lacking. Did you try these supps one at a time? I feel a possible benefit from two time release NACs per day.
The one MPN med that is known to reduce inflam by design is Rux, at least one member with PV is doing well with it, but I don't think they Rx it for ET.
Sorry for the abbrevs. NAC is N-Acetyl Cysteine. This is an amino acid that has potential benefits for MPNs. This table I've posted before shows results of a survey that point to NAC being helpful (it was the best effect among the supps listed) Curc is curcumin. This is derived from tumeric. It did not show well in this survey, but Curc likely requires the newer high potency formulations to get its benefit. Hunter has pointed out "Curcuwin" type as one option. I am taking that one.
NAC is in an early real clinical trial right now for MPNs.
Lab tests have shown these to be active against many bad actors we care about, but none of these have hard clinical evidence of benefit for MPN yet.
If your Dr is ok with it, it could be worth trying.
Hi, yes I am currently combining curcumin and NAC, though I have not yet located time-release. I think that would be good as I have more issues with stomach acid now, possibly due to aspirin and NAC triggers it too.
Yes, as of last bloodwork I am still in CHR, though my platelets stick at the high 300s, another test due this week.
My haemo who is our MPN specialist in this part of the world, likes under 400 and I suspect that I will exceed that on a two week injection interval. I am prepared to counter that with your recent postings on the irrelevance of platelet count. I have hypertension so I know she wants to play it safe. She also said that one would want to be on enough INF for the bone marrow to 'notice'. Slippery talk around here as allele burden is not available in British Columbia where I live.
I joined the familial study at UC Irvine (Dr. Fleischman) and they did one on saliva and it came back at 7%, but I know that will not be 'accepted' as it was not done on blood, and not done in Canada. Yeah, I know that is lame but that is how medical professionals view results gained without them (and I know this).
Well all that being said we are individuals and I will press for a reduction in frequency. I got periorbital oedema on 90ug/week near the beginning of INF journey which subsided when I went back down to 45ug, and I am not a large person.
I am sorry that you have malaise, weakness and fatigue and your haemo wants you to still take more Besremi. I see from your previous posts that you are not a big person either, so maybe on a weight related basis you are on what you need? I am sure you have good discussions. Your posts and thinking are very informative and rational. I see from the next post down that time might improve how we feel on INF, but perhaps not by enough to make gardening comfortable.
It seems allele burden is hard to get in "British" UK as well.
Hunter has also posted well on PLT matters. At least your Dr should provide specific reasons that you require such tight PLT control.
Your Dr's idea on knocking harder on the marrow I think matches mine, exceed CHR to get that benefit. There is at least one report that proposes such, I've posted somewhere. But they had no data to support this method. From another "posted somewhere" report it takes at least 4 years to find any BM changes. So marrow response is not easily acquired data.
I didn't know allele was avail via saliva. If Dr. Fleischman approves this method it may be valid. If so 7% is low, but within ET experience.
I discussed weight vs dose with my Dr. Only an earlier form of INF (PegIntron) was weight dosed. I guess it's like vaccines, messing with the immune system is not weight dependent.
That for the support. I try to post to get us to think about things, and learn together. Often more questions than answers.
It's correct IFN often gets better with time, but I think not if the dose is excessive. (excess being quite indiv dependent) I'm having a rare string of decent days, keep this up for another 10 years and I will believe that IFN acclimation theory.
I sympathise and empathise. I have symptoms similar to you. I have been on interferon for about 15 years. Although I was so fatigued in first few years and intermittently since, I put the aches and pains down to stress. I wake up with severe neck, shoulder and lower back pain. I do exercises and it eases it somewhat. I take NAC 1 a day and I think it helps. I also take other supplements including glucosamine. An Epsom salts bath before bed seems to help. I have been advised to do regular sessions of various breathing exercises by osteopath. Some mornings I am pain free and I hope for more of these. I am looking into buying a new orthopedic pillow. I believe that this chronic pain is caused by lying stiff, crooked or rigid. And I wonder how to reduce this. Exercises before bed and during night do help a little. Lastly I feel that doctors can't help with this apart from prescribing 'relaxing' sleeping pills which I won't take. So I have to find a way to reduce the stress and hope pain will ease. I wish you luck (and myself!!)
Though your news is not the best, it is good to hear from a person who has long experience with INF. I hope your orthopaedic pillow helps in the night.
I agree that being still, lying or sitting makes moving more painful. It is hard to avoid sitting as then I don't have pain unless I poke myself in the muscle deeply (and why would I do that?). "Sitting is the new smoking", I have heard.
I am impressed that you have the energy to have a bath before bed, I can't wait to retire and sleep as much as 12 hours a day. I wondered about Epsom salts baths as taking Mg really helps with nocturnal leg cramps which started with my MPN.
Good to hold off on sleeping pills, they are a bit of a trap, I don't take them either.
Best of luck to you too; I am reminded to feel grateful for what I have, it could be worse and with INF there is a chance of disease abatement/remission. Hope we get there.
Hi Planti, Sorry to hear of your inflammation and fatigue. re fatigue, I am also on PEG and the fatigue and brain fog is bad. And I am only on 45 ug every 4 weeks. On fortnightly I was falling asleep at the dinner table. So perhaps reducing your frequency is a starting point seeing as your counts are under control (PEG is long acting, so it shouldn't be a problem to give it a try). I had wondered if it really was the PEG causing the fatigue, but when I had to go off it for a while recently, almost all of the symptoms disappeared. But like you I'm caught in a bind because it has brought my bloods into the normal range, except for HCt - I am having about 3 venesections/year so that's ok. I don't have any other solution. About the only other option I've heard is Rux, and it's not easy to qualify for that, especially with ET. If the specialist has any suggestions about minimising the side effects of PEG I'm sure lots of people on this forum would appreciate hearing about it. All the best.
Yes, I read that rux and INF can be a very good combination with anti inflammatory effects, but not given at this time for ET. I wonder if there are studies?
Thanks for writing about your experience, at least I can understand that it is not 'in my head' and at this time, still a problem for others too, so I am not alone. Maybe we can start a sleeping club?
Brain fog is something that I don't think I experience, but given I live alone and don't have very in-depth discussions with my dogs, perhaps I am not aware.
My haem is reluctant to reduce to less often than 14 days but I will press for every two weeks with my next appointment as my blood work has been 'normalized' on INF. She says that you have to give enough interferon for the bone marrow to 'notice'. I am darned if I know how to tell if my bone marrow has 'noticed' as they do not do allele burdens here.
I will definitely post any suggestions, which I suspect will be diet and exercise, as well as acceptance, and maybe a better selection than ibuprofen for days that really need help.
Hi Planti. I think you've made a very good point - How are they going to tell if the bone marrow has 'noticed' if they aren't doing allele burden testing? Your Quality of Life is more important. There are a lot of people on this forum on interferon who are on larger dose gaps than 10-14 days, especially once their bloods have normalised. It's a drug we will take long term, so it has to be managed for that. A lot of the literature is about it's use in Hepatitis. Some of the French research (Prof J.J Kiladjian) has people reducing their dosage regime and even stopping interferon after several years (if they get a very low allele burden result) and they still maintain their bloods in the normal range. So I think your haem isn't very well informed about this context. I hope you have an informative visit. Best wishes.
Deep thinking roommates (maybe not so much) Brain fog is "you know it when you have it" My husband had it bad with long covid.
On the marrow, allele (AB) responses, these are actually separate things. AB is measured in marrow, blood (or apparently saliva as you did) and easily tested, if your medical provider cooperates. Your Dr is likely seeking histological response in your marrow. This is improvements to structure: fibrosity, cellurality and other marrow features. I assume you've had a BMB (marrow biopsy) as a reference before starting IFN.
If your Dr is looking just for AB, then not having that test available makes no sense.
Unfortunately histological and AB responses are not tightly connected from what I've seen. Histological is the one that takes at least 4 years to see, from reports I've read. AB can often see a response in the 1st year on IFN.
On the dosing interval, we've seen 4 weeks with PEG is not so rare, so it is known to be possible.
Hiya, I guess that AB is perhaps only one way in which response might be measured and true that it is of interest but not deemed essential. I am assuming that the AB was done on saliva as I only provided nail clippings and saliva. I am not sure though as her methods are still being worked out and she did not make it clear what sample was used.
My doctor's opinion of AB is that it is only for academic purposes, that is that it won't drive clinical decision making and therefore the fact that it is not provided by our health system is not critical. I have to agree, though I would like to have all the boxes with numbers. Health care costs are staggering.
I did have a BMB, at my request as it was offered but not recommended. It was better than expected though he had to go in twice.. I am interested in the science of it all though things are just in the exciting stage. When my dad had ET and before that my uncle had Polycythemia Rubra Vera as it was then known, they did not know about the familial form, nor Jak 2 or any other mutations. It really surprised me to see all the research when I was diagnosed.
Given that this is for life, I really do think that the quality outweighs the quantity. I hope that your haem agrees not to push your dose. I will advocate for the two week injections and perhaps, if my platelets don't stray and my symptoms continue to affect function, I will ask for further reductions.
Good to note about the brain fog, I am somewhat reassured. I hope that your husband is over his?
I feel AB is worth knowing. It is an increasingly accepted measurement of IFN effect and has exited the academic box (in my opinion). The actual value of lowering it is not settled. Lower allele at Dx is broadly known to have better outcomes, but the value of lowering it may be different.
In any case as i've posted, I'd prefer to lower my AB and find out it didn't matter vs leave it alone and find it would have. Good thing is I've posted a few reports that found good correlation of CHR to AB reductions, so if we keep CHR on IFN the AB might follow. A clinical decision could be to up the dose if CHR and no AB reduction. I might be up for that if it were a possibility.
My favorite plot here shows what IFN can do for allele on average. PEG has shown similar results. The Besremi trial didn't even have this as an endpoint, but they have been bragging about it since the long results came in.
Did your BMB have any notable findings?
Hunter has posted on his family's MPN connection, and others too, surprisingly common in the forum.
Hubby is ok on the fog now, but still gets occasional real bad fatigue. He near died in the acute phase. My business partner gets occasional long covid effects too. We all had the original one early Mar 2020.
It sounds like you have tried all the same things I have to deal with the inflammation. Curcumin does work for me at 550mg bid. Note that I also take SPM and L-Glutathione. The Qigong also helps. So does massage therapy. I have also tried acupuncture but do not use it on a regular basis,
Dr. Fleishman addresses the issue about controlling inflammation this way.
“The problem goes well beyond individual cytokines and a single JAK pathway. Inflammation requires a whole compilation of cytokines working together, and multiple pathways are engaged. If you only target one, other compensatory pathways could upregulate.”
You are quite correct to be cautious about the ibuprofen, even though it helps. It is contraindicated along with aspirin.
Measuring inflammatory markers is complex since there re so many of them. TNF-a, CRP, and ESR are always normal for me. I have shown elevations in cortisol, IL-10, and TGF-β. As much as I would like to have an objective marker for inflammation, the inflammatory pathways are just too varied and complex. I am using the measure that matters most, even though it is subjective. That is - how do I feel? Do things hurt? I can feel the level of inflammation in various joints. Ultimately, this quality of life marker is what matters the most.
I saw that video and it is informative and hopeful about future, though not much available for the now.
I started SPM and have tried Glutathione drops in past but must admit that I prefer using NAC as the Glutathione has to be refrigerated and I forget to take it.
The fatigue and inflammation symptoms have been there all along, I was sort of thinking that nothing can be done and maybe it can't but I can at least make it a project. I am really glad that Dr. Fleischmann is working on QoL issues. Some days are a bit better and I am thankful for those and the symptoms I don't have (like the itch).
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