I have PV and take Besremi with blood counts under control. Four days ago I had an unknown medical event that ended with an ambulance visit.
I was at home doing an easy workout with dumb bells in my latest attempt to improve my activity level and minimize muscle loss. Weight amounts were light (10-15 lbs) and I was spacing exercises out since I experience shortness of breath with light activity.
I started feeling out of breath, and sat on the floor to recover. For the next 5 minutes my breathing became heavier and I was slightly dizzy. My hands and arms began to go numb, then my feet, lower legs and face. I felt horrible and was unable to breath normal and could hardly speak between breaths. I tried to stand but was wobbly and had to lean on a wall for balance.
Eventually my hands were so numb that my fingers and wrist curled inward towards my forearms. I could force them open but when I relaxed they would curl inward again. My wife called for paramedics and they arrived about 10 minutes later. Shortly after, the numbness decreased some, I was breathing a little better, but was shaking visibly.
I was given a 12 lead EKG which was normal, BP was 150/80, pulse 77, glucose 78. Paramedics offered a transport to ER, but said my condition wasn't critical and blood testing was likely the only further testing they would do, so I declined.
A half hour later I felt better, although very weak and tired for the evening and next day. I called my MPN specialist's office and their nurse says this sound like a neurological event. I can't get a visit with my primary care doctor for over two months. I am hesitant to exercise again without knowing what caused this.
Has anyone experienced something similar, and what was the outcome?
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Please read all my recent posts, back to Nov '22. Your experience is very similar to the warnings I got while on Bes. Like you I had perfect bloods in all areas. The neuro stuff is a red flag. My mistake was taking that last Bes dose while these warnings were up and I now have the nasty autoimmune of Sjogren's .
From the Bes label: "Interferon alfa products may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune...," Rare but potentially permanent. I am the 1st case on this forum and with care hopefully the last as we are doing a large trial in real time of this agent.
My autoimmune was triggered by a flu vaccine, but that is not required for IFN to cause such.
Some autoimmune conditions are driven by natural body made IFN-a, so adding more if you have one could be not useful. In fact some autoimmune treatments specifically seek to reduce IFN-a.
You should get a full workup by a neurologist (EMG/NCS and hands on check) and a full rheumatological blood draw. (RH, ANA, SS-a ...ect) I was neg on everything except the SS-a for Sjogren's. I also had brain and cervical MRIs.
In the meantime you might want to discuss with Dr a pause on the IFN till all that data is in. Your blood counts should hold for a while while off IFN, mine held for three months. The general advice when IFN s likely causing autoimmunes is to stop immediately.
If you decide you're at risk, Rux is the best option, it can moderate autoimmune disease.
EPguy, your previous experience is on my mind as I research possibilities.
The dizziness is typical for me, but the extreme numbness in all limbs and face are very worrisome. I do not know if the Besremi has caused this or if my regularly severe PV symptoms triggered the episode.
You make a valid point that my counts will likely remain stable with a temporary IFN pause. My MPN specialist suggests that I continue my current regimen of Besremi (500mcg), and that I consult a primary care physician to address this episode.
To complicate things, I had to leave my last PCP due to insurance change and have spent six months waiting to see any new PCP. All facilities in my region are understaffed. I called again to see if I could get in early, but was told no. It will be mid-August when I have my "new patient appointment".
I appreciate your response, and will ask about possible rheumatology and neurology testing. Glad to see that Rux has you headed in the right direction.
Looking a bit more, your episode is indeed worrisome. Only a real Dr can make these judgements, just my opinion here. I'm probably alarmist (with a personal basis to be). TIA or MS seem to be relevant. Your MPN nurse points to the neuro option. From an MS site:
"Claw hand refers to a hand deformity in which your fingers curl in toward your wrist or palm into a claw shape. It may be difficult to extend or open your hand. This condition can be temporary or permanent, depending on the cause. "
and "Numbness of the face, body or extremities (arms and legs) is one of the most common symptoms of MS." (there are many other reasons it can happen too)
The face and claw hand may have various harmless causes, but it also fits MS. As an all new symptom it is more interesting. An MRI is normally used to look for MS conditions. MRI also can find some damage from TIA's, I've been thru all of this. It is most inconvenient you don't have a PCP right now.
At 500 that's "the whole bottle". I got trashed on 100-140. But no way to know if the amount is relevant. At least you have an MPN doc. My suggestions is to discuss with that Dr your autoimmune concerns. I may be wrong to push this, but with IFN and autoimmune, prompt action is critical.
500 mcg is an extremely high dose of Besremi. I know a dose like that would put me in the Emergency Room because I feel bad at 200 mcg. A small, but substantial percentage of patients, including myself, are finding Besremi interferon intolerable or marginally tolerable.
However, just because Besremi interferon makes you ill doesn't mean all interferons would. Some patients, including me, have had essentially no side effects from taking moderate doses of Pegasys interferon weekly for many years.
So you might want to consider asking to be switched to moderate dose of Pegasys interferon (90 mcg per week).
Giving up on interferon entirely might mean sacrificing 5-10 years off your lifespan because no other drug has a track record of suppressing disease progression for decades.
3:21 mark: "disease progression to myelofibrosis was inevitable in about 50% of patients after 30 years offollowup. This led to our 3rd key finding which was the excess deaths from progression of disease to myelofibrosis can be prevented with interferon-alfa. In fact patients treated with interferon alfa had a normal life expectancy across a 30 year duration of follow up. Their survival was comparable to the age matched population without PV."
The evidence of long term benefit for both IFN and Rux is fairly convincing. It is newer info for Rux as in recent posts.
IFN likely remains best for MR, esp when starting from higher alleles.
One problem with the Rux studies is their selection of HU intolerant pts. Most IFN studies did not have this limitation. The current Ruxobeat trial is looking to HU tolerant pts, results will be interesting.
Yes, 500mcg is full throttle and I've been at this dose for the last 11 injections.
I am glad that Besremi worked quickly to bring counts under control and to be phlebotomy free for 6 months. Overall I have managed well with minimal side effects and would like to continue IFN for disease modification. Then again, I also need to know if Besremi caused this latest event and what that could potentially mean. Thanks for input.
I am not experienced in your symptoms but I would urge quicker action than the two months they want you to wait, that appears ridiculous. If it was me I would want a rapid set of tests to find out what happened and why. EPGuy seems to have knowledge of that area and what he wrote seems logical so maybe worth starting there.
in my opinion the event you’ve described warrants a consultation/tests asap.
When I experienced my last TIA I was scanned & thoroughly examined within 24 hrs. I recall the consultant saying to me that it is v. Important to get checked by the professionals asap.
Threelions & ainslie, I strongly agree with you both. I'm disappointed my MPN team's only response was a call from the nurse telling me to drink more water and take it up with my PCP. They know that visit is months away.
I had something similar before I was diagnosed wit ETJak2+ & PV struggling to breath mouth dropped couldn’t speak, hearing one side went arms felt numb but really heavy, they thought I had a TIA but scans showed not but possible migraine aura which can do this, this defo needs checking out, can you get in touch with your nurse specialist.
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