Besremi Adverse Effect??

[hunter5582]

I have experienced what may be arthralgia as a Besremi adverse effect. here is the exchange with the MPN Specialist on this topic.

ME Just a head up. I increased the dose of Besremi to 150mcg on 05/25. Prior, I had experienced some unexplained pain in the right achilles tendon that I thought was just a slight tweak. Yesterday I developed significant pain in right knee for no apparent reason. Suspect this may be arthralgia from the Besremi. Planning to stop into Urgent Care to have it looked at. Doubting they will see much, but want to rule out another cause.

Any thoughts would be appreciated.

ME I did stop into Urgent Care today to have knee assessed. X-ray show some arthritis (already existing) but no sign of apparent trauma. There is some slight swelling in the knee. The NP could not determine if this is just an arthritis flare or a Besremi-induced arthralgia. She was not clear is a Besremi AE would just affect one joint. Makes me wonder about a "weak organ" phenomena. I have required hyaluronic acid injections in the knees. If it is a Besremi AE, maybe it just showed up first at the weakest point. Or it really is unrelated.

Always, your thought are appreciated.

MPN Specialist Certainly possible that it is Besremi. This is a relatively common side effect. If it continues, try going back down to 125mcg and see if that helps. Side effects are usually dose dependent.

At this point it is not clear whether these events were due to the Besremi or an unrelated issue. In both of these events, the symptom resolved on its own in about 2 days. I had the X-rays sent to my orthopedist for review. We will see what he says. I may opt for another round of hyaluronic acid injections into the knee. I do have significant arthritis in both knees related to prior injuries/surgeries. Getting a periodic "lube job" on my knees is already a part of my ongoing care plan. Even if this was a Besremi adverse effect, I am thinking that I need to give my knees the best chance possible to not be a problem.

I will continue with the plan for 150mcg Besremi. My last CBC still shows HCT at 46.5%. I really do not want to drop my iron levels again since I feel so much better with iron restored. If the arthralgia keeps flaring, I will drop to 125mcg as the MPN-doc suggests. If the HCT stays up, I am thinking about trying a mini-phlebotomy (250ml). Maybe I can nudge the HCT down enough to give the Besremi more time to work.

All the best to all of you all.

[EPguy]

I recall you're also taking Curcumin to help the arthritis. But naturally there are limits to what that can do.

I've had joint and muscle pain specifically in the entire left arm since Dx, but Bes may have added to it. I think cutting the weight lifting might help but I'm keeping it up for now.

My last two doses were 70-80, last CBC was good, I'll find out Tues if that is holding. I think 100 mcg is my current limit and your note here suggests the joint pain may be another thing to look for as the dose goes up.

I've also had leg cramps as a kid which returned with MPN Dx and seems to be a bit more with Bes.

[hunter5582 in reply to EPguy]

The curcumin definitely helps with the osteoarthritis. More so than any NSAID I ever took. However, it cannot do the whole job. The hyaluronic acid injections in the knee were very effective. They helped prevent a surgery. It may be time for another lube job in the knees.

Hope you find the right Besremi balance for yourself.

[krotsida in reply to hunter5582]

I have equivalent problem in my right knee and had hyaluronic acid injections too, But I think exercises helped me more than the injections.

They hold the muscle better and made walking easier .

Αlthough i have small bone fragments that appear on the x-ray on the left side of the knee which must be removed.

In fact i remember there was a gentleman on this forum about 2 months ago, that have them removed.If he reads these lines please maybe he can help me by explaining how is it done and about the recovery.

[Kelly2 in reply to hunter5582]

Hi. Who gives you the hyaluronic injections?

[hunter5582 in reply to Kelly2]

I see an orthopedist who does the injections.

[Barbiebreath in reply to EPguy]

I had terrible leg cramps last summer. I was up several times a night. I tried everything OTC I could find. Apple Cider Vinegar capsules did the trick.

[hunter5582 in reply to Barbiebreath]

I had leg cramps as a separate issue too. turns out magnesium deficiency was the issue for me. Mg supplements fixed the issue.

[EPguy in reply to hunter5582]

I have seen here others had benefits getting Mg increased. I had one Mg test last Nov, it was 1.9, at the upper limit so no help there.

I see Apple Cider Vinegar is known for cramps as Barbiebreath notes. My cramps are not bad enough to need a fix for now.

[Hopetohelp]

It’s so difficult to know what is an mpn problem and what is a ‘normal’ problem. I had an increasing problem in left knee and couldn’t kneel on it. Went on for about a month and as it started to improve the right knee started playing up in the same way. Both went full circle and are ok now. I’m on peg so not sure if that could cause same side effect as besremi but thought I would mention it. Sounds like you have a good plan for each eventuality

[hunter5582 in reply to Hopetohelp]

Pegasys can have the same adverse effect - both arthralgia and myalgia. It can be hard to figure out what is what though. Our knees tend to give out on their own, independent of the MPN of the treatment. I have torn the meniscus in both knees and had surgery to repair it. This predisposed me to develop arthritis. The only question at this point is whether or not the Besremi had a role in the recent flares of joint pain. We will just have to see how it goes.

[Hidden in reply to hunter5582]

Sorry to hear Hunter. If you recall l had knee and shin pain with PEG. I knew it was connected as it occurred a few days after each injection and lasted around 4 very uncomfortable days. Paracetamol really helped. But a few months in to regular doses and it stopped.

[hunter5582 in reply to Hidden]

Glad to hear it resolved. Hope I experience the same.

[Mostew]

Hope you track down what's causing adverse effect. You are a good detective ..

!!!

[Kelly2]

Yes I think a phlebotomy would be best. Do it and tell us the results.

[hunter5582 in reply to Kelly2]

We will see how it goes. I am hoping to be able to tolerate the Besremi and avoid a phlebotomy, but will do one if I have to. I got to the point where the iron-deficiency symptoms were worse than the PV. Hoping to not go down that road again. Perhaps with the Besremi I will not need to be so severely iron-deficient if I do need to use phlebotomies again.

[FG251]

What a balancing act! Hope you manage to sort it soon. 🤗

[ainslie]

It may be that the lower dose of Bes will gain momentum with time, I know someone on another forum who said it took 2 years of high dose Peg to become venisection free, he was on 180 but now 90. Smaller venisection work if more frequent , before Rux I was doing 125ml per month, it certainly gave me very even counts. Also if necessary you could at some point consider Rux/Bes combo , lower dose of each. I have zero sides from Rux, except if I let it weight can increase easier than prior. These are not suggestions, just thinking out loud.

[hunter5582 in reply to ainslie]

Thanks for your thoughts. When it becomes available, I would consider combining rusfertide with Besremi rather than using phlebotomies. I would also consider ruxolitinib, but have to keep an eye towards the leukopenia too. Ultimately hoping the long term efficacy of Besremi will be the outcome.

[ainslie in reply to hunter5582]

yes very good point, Rusfertide combo could be a option if Bes needs some help

[Wyebird]

Oh bother just when things were looking up. I too have arthritis in both knees one gives me bother. My hiking days are over. I do hope you get sorted soon in some way or another.

[hunter5582]

If you have not tried it, the hyaluronic acid injections may be worth trying. It made a huge difference for me.

[Fluffylittle]

The injections are certainly a good plan to treat the pain. I know you have also had some issues with gout before, the swelling makes me a little curious on if Beresmi could cause a recurrence. Also, you do have that O.L.D. thing going on. All jokes aside, let me know if you do need to go for more surgery. Benefit to this new job is I can do some stuff remote so I can travel after hurricane season is over.

[hunter5582]

Thanks Boo. The kidney issues turned out to be a tempest in a teapot. I am, however, having ongoing issues with osteoarthritis and tendonitis. The knees are the worst. The docs confirmed that what I experienced is most likely transient arthralgia from the Besremi. If it continues to recur, or if I just have the knees get painful again, I will go back in for the hyaluronic acid injections. That has been the plan all along. really want to avoid any more knee surgery.