We went on our regular yearly camping trip to Grand Canyon last week. (See our micro RV at camp)
It started ok but then I had the longest set of bad days since Dx. For the first time I was clearly weakened, not just maliased. I skipped exercise for several days, that has never happened in 20 years, and walking up hill was an effort, which is unheard of for me. At some points I thought an emergency visit might be needed, a worry when you're in the desert. Last year on HU I had only one real bad spell during this annual trip.
I took a Bes dose of ~70mcg a few days before leaving and actually felt instant relief for a while. All was fairly ok till 4 days later. So far ~ 7 bad days in a row. My prior dose was ~110mcg, I reduced it to 70 in hope of an easier trip.
My Dr says it's normal to suffer as INF gets established, I am aware of that, and hope it is true here. In particular I think the once monthly dosing that happens after stable bloods will be better.
It's possible the altitude was an issue, our destination is at 7000 feet. Have others here found any problem with altitude and INF?
I was ok on 50mcg and my blood counts were apparently responding at 50. So maybe I'm good at that dose. If it does not get better on any dose I will ask Dr about switching to PEG as has been discussed here. I do still want INF benefits. My Dr favors Rux, and it could come to that.
I'm taking curcumin and ALCAR, these seem to help in general but not last week.
My next dose tomorrow I will try ~60-70 mcg. I will update any changes, could be lower altitude will help. CBC is next week.
I finally talked to the nurse at the specialty pharmacy. She did not have much enlightening to say other than watch my salt, exercise etc. These are not my issue. She also said generically that I have added Covid infection risk, but we've discussed here that INF, and most MPN in general, is not broadly at added risk. Among exceptions is when on Rux.
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Another complication for me is likely long covid. This well timed article has an update on these studies. These are early Covid cases, later than mine but likely similar early variants. Any members on INF who had covid may have relevance here. But later variants naturally have less long term covid data.
Selected persistent long haul symptoms that match some of mine (see report for others) : <<numbness/tingling, headache, dizziness, tinnitus, and fatigue>>
<< a significant increase in the prevalence of heart rate and blood pressure variation and gastrointestinal symptoms>>
<<dysfunction could be due to ongoing cytokine release>>
That last line is notable with INF. INF causes (and also inhibits) cytokine releases as Covid also can activate excess cytokines. Cytokines are inflammatories. It could be INF + Long Haul make additive cytokine trouble and I will suffer with this combination.
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EPguy
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So sorry to hear what you’re going through, especially on vacation. I really can’t give you any advice since I don’t take Besremi, only hu. I can definitely relate to the overwhelming weakness and fatigue. I hope you get it all sorted out soon.
I just tested with the Anemocheck app. I have found it's way off (~3 points low) but gives a relative trend. It suggests a similar reading as my last CBC May 10, Hb ~14.5. (HCT 42.6)
Good to know you found INF ok at altitude.
I just saw your update on MPN pipeline. Thanks for the encouraging info.
My WBC is low end but individual items all in range at last CBC.
I did start having this effect, but only after starting Bes. I did not get it otherwise even when bloods were uncontrolled pre-Dx. My H/H numbers (and most others) have been fairly stable on HU and INF so far so I can't make a connection to effects from that. WBC is declining with the INF.
I believe needles is a version of classic pruritus that is common in PV. My Dr says it is the INF causing cytokines (MPN causes them too) and a sign the INF is working.
At 7000 feet the level of oxygen is 20% lower. You said earlier that you have some 20% of your RBC malfunctioning ( allele burden > 20%). So, it seems hardly surprising to see you struggling a bit at this altitude! You are likely to get better quickly at a lower altitude.
I tested with blood Ox finger tester, it lowers my normal 97-99% to 93-95% at altitude. Same result as last year, my husband gets a similar result and I think it is normal, as you say.
My new fatigue was similar at lower altitudes last week too. But I do suspect the altitude contributes. These trips are our main pleasure so I hope to be able to continue.
My AB was less than 20% at Dx but likely changing for better or worse on Bes.
I'm increasingly suspecting an interaction with long covid. I hope to post more on that. But I want to tough it out as much as possible to enjoy the INF benefits at some point.
How disappointing! I do recall reading that people without mpns who climb mountains can get a temporary case of PV due to high-altitude so your idea on that might be correct. Hope it resolves itself quickly for you
I'm so sorry to hear about the trip and how you felt. Did you have long covid symptoms prior to starting Besremi? I agree that high-altitude, unless you are used to it, can be taxing regardless if you are Besremi or not.
There are three of us with long covid, me, my husband and my office partner. We all got Covid early Mar 2020 and long covid since. My business partner got very mild covid twice more for 3X of them (+ all the vaxes) but he said only the first one caused long covid.
For me there is much overlap with MPN symptoms, but I think the cykotines from MPN, INF, and long covid are all acting together.
We're all 2+ year long haulers, so we are getting used to it. It did get easier for all, but seems to have plateaued. My hubby gets a day or two every month with cough, bad fatigue and much horizontal time, business partner gets breathing trouble and fatigue, I get misc. It's not a big problem by itself for us as we are used to it, but with the MPN stuff it seems additive.
I am doing better today, I just did my Bes shot today. I get dizzy for the couple hours after but I found my prior shot provided a couple days of good relief. If/as that good part gets longer, things should be looking up.
This post from Paul123456 is a great example where Paul reports an expert said "Very excited about the current pipeline of drugs and their potential to defer SCT".
I too am sorry to hear you’re feeling this way on vacation. Today’s Washington Post newspaper had a long & free article describing the numerous studies on long COVID. It said the risk is 1 in 3 or 4 in people over 65 & a less in under 65. I don’t know how to post a link but strongly encourage you & everyone else to read it. Risks don’t change based on severity of initial illness or the variant. Don’t over do anything. Katie
I found that. There is a bunch of recent reports on long covid for some reason. With how common it is it's possible some other members here have some version of it that is adding to symptom burden.
How awful for you. I do hope it was a one off. We never know what’s going on with our bodies. It could even be that you had an other infection you were fighting. Good luck
I did get an itchy bug bite, one can never know what each click we MPNs feel comes from. Today is better, possibly my regular several day honeymoon with INF after each shot. I will update next week, with CBC planned too.
Sorry to hear this. Very disappointing to feel under par on holidays. It may well be a combination of altitude and long Covid symptoms but maybe you’re not making enough allowances for your MPN itself which, regardless of what drugs we’re on, can flatten us occasionally. I’ve done that very trip in an RV some years ago (well before diagnosis) and found it exhausting. My quick fix now for MPN fatigue is simply REST. I suppose we can’t expect our meds to do it all. Really hope you’re feeling better by now and that the hols weren’t a write off. 😀 Ettiel
I do feel better last two days, thanks. If it holds ok thru next week that is progress. The main diff with this year's trip vs last year is the Besremi vs HU. Could be as some say here, INF and altitude are not good together.
I was traveling in Peru on PEG 90mg every fortnight. l was fine until l reached 3600 m /11000 feet. Then felt dizzy weak and a little nauseous. My symptoms didn’t improve. The local coca leaves remedy didn’t help either After three days l decided to move down a 1000m to the Inca valley and all was fine within a few hours. But these symptoms are also not uncommon at altitudes
Have you been to altitude prior to MPN Dx? If so was it better? 11000 ft is really up and I could imaging many get sick there.
Your move down by 1000m (to about 8000 ft) helped. That is still quite high, I was at only 7000ft and it was never an issue before. If I can switch to monthly INF I could go away on week 3 and maybe all could be fine. We may find out next year.
Yes l have been at high altitudes on occasion before my MPN and also during the Aspirin monitoring phase My experiences have been variable. I also have thalassemia trait so my red blood cells are smaller and my blood count can look a little different to the norm.
Sorry about your difficulties. Recently, I have been breathless after climbing small hills at golf course. When asked, I used the analogy of being at elevation (I feel like I'm in Denver) because that is what it felt like. Also for me anyway, my new hematocrit level on pegasys is maybe 15% lower than it used to be. Now add real elevation to the MPN induced weakness and you are impaired like Dovme experienced and you are experiencing. Maybe like climbers you have to some how build up to it slowly and let your body adjust. I seem to be slowly doing better with the hills as I exercise more...
It make sense HCT (and Hb) relate to oxygen capacity. I have some data there; my HCT and Hb are similar this and last year. I also had my pulse ox meter, similar readings both trips. (low at 93-95 from the altitude) Main diff is the INF vs HU. But it's possible my MPN changed even if bloods have not.
I have not experienced that sort of hill climb fatigue ever before at any altitude. I'm back to my regular exercise now. I'm sure at 11,000 ft like Dovme was at would knock me out.
I haven’t read the other comments yet, but I know for me I feel really terrible at elevation. In fact, it was after a long trip to Colorado and sleeping from 7-10,000 feet for two weeks that I began to feel quite ill. I’ve never been the same since that trip. Sounds dramatic, but it is the truth. I feel really terrible about it because my husband and I have always spent our vacations camping, hiking, and rafting. I’ve done fine at lower elevations, so we are exploring different places like Palo Duro in Texas and canoeing in Minnesota.
I’m currently just on aspirin, but my hematocrit is creeping up so that’s going to change soon.
From your other posts you have suffered from MPN related fatigue. I've had more malaise than fatigue till last week. Was your MPN Dx near the time of that mountain trip?
Fatigue is my main problem and if I could solve it, it would be like I didn't have PV. I'd barely notice the other symptoms. I've made changes to try to improve things such as working out even more and losing eight pounds, but it has made no difference except I'm thinner and fitter. I guess I look nicer while I'm napping. And yes, some days I'm almost like my old energetic self and others I'm knackered. I keep a journal and have found no pattern.
That trip did lead to my diagnosis. It took a few wrong turns as I was checked out for every problem middle-age women get tested for such as my thyroid, auto-immune diseases, and hormone issues. Once a hematologist was brought on board, I had an answer. I've had a second round of all those tests recently. Again, the only major thing wrong is the PV.
Happy to hear you’re feeling a little better. Hope it holds.🤞 Am delighted with Rux thanks. Changed my life. No skin itch, no spleen problems so apart from my energy being pretty impacted I feel really good most of the time. I know it won’t last forever but I’ll cross that bridge when I come to it.
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