I see your prior post that your under care by Dr H. I assume she recommended the stop for the IFN. Good advice. I also see your note of "The numbness is a real issue now with numbness,red stiff finger joints..."
Since these started after you began PEG it's an indicator of potential autoimmune troubles. Newly red and stiff joints along with neuro troubles is a red flag for some autoimmunes. You can see in my many posts since Nov 2022 I have suffered about a worst case of a different one.
If your symptoms improved/stopped after stopping the PEG it's a good sign the IFN was the cause and that you stopped in time, I did not. Immediate stop is critical if this is a IFN caused autoimmune condition and your case appears it could be.
Besremi is unlikely to help here, as both IFNs share this risk. I've been advised that I can never again take (rechallenge) with IFN. Who is suggesting you try it? It would be interesting to know the rationale.
If you do try again I expect your Dr would start very low dosing. You should be sure to work closely with a rheumatologist and neurologist to monitor your bloods (ie ANA, RF, CRP, SS-A sedimentation and various others) and your symptoms for any sign of recurrence before dose increases.
One common neuro test is EMG/NGS. These electrical tests look for troubles in the nerves. The Drs also check your strength, reflexes and sensations. Unfortunately rheum and neuro are both black arts to an extent, MPNs by contrast are readily quantified.
See below for the black box (severe) warning for Bes. I can attest this is real. My troubles were triggered by a flu vaccine, but I believe it's the combo with IFN that did me in.
--
"WARNING: RISK OF SERIOUS DISORDERS
See full prescribing information for complete boxed warning. Risk of Serious Disorders: Interferon alfa products may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Monitor closely and withdraw therapy with persistently severe or worsening signs or symptoms of the above disorders."
The suggestion of Rux is a good one. I am on it now. It calms the immune system, esp good for those who experience the opposite on IFN. The most recent reports on Rux show it is quite good for PV. Notably some autoimmune treatments specifically seek to reduce INF-a in the body, so adding more for these patients does seem unwise. Rux can also control some autoimmune conditions as it controls the MPN.
I went three months after quitting IFN with bloods in range, probably could have gone longer, that is a neat feature of IFN. I also really liked the infrequent dosing. But staying vertical is a higher priority.
Dr H did suggest Rux as the first option instead of INF ,during my
last appointment this month .
I wa reluctant, due to potential side effects reported ,when I was first diagnosed (2014/15)
Apparently you need hydroxy tabs in combination with Rux at the beginning of treatment.
I realise this was a naive response on my part.
As you mentioned the recent research on Rux shows a very positive response with PV.
Dr H also mentioned Bomedenstat,LSDI inhibitor,which is awaiting trials here.
(This is primarily for myelofibrosis not PV?)
Regarding the autoimmune issue that you mentioned,I do suffer from chronic lumbar spine issues which increase when my haematocrit becomes unstable.
However this lumbar/sacral pain seriously escalated recently .
Saw a rheumatologist and MRI findings showed ‘insufficiency fractures’ in the sacrum.(No recent trauma)
Acute episodes of diverticulitis have also returned recently .
I am sure these symptoms are related to the inflammatory issues /increase cytokine levels etc associated with MPNs ,which may affect other folk here too?
I agree many discomforts come with the MPN condition, and of course us getting older.
Your new neuro and joint issues, and their clear connection to IFN treatment, I think is why Dr H stopped it. These are of the sort that are a particular concern.
Did the rheum do any of the blood tests I noted?
I've not heard about Rux requiring HU at the start, but in 2014 it may have been standard practice. At least it's likely that many pts were on HU when starting Rux, as I was when started IFN. So the two meds can overlap some in current practice. In 2014 Rux was new and mostly for MF. The PV application is only recently getting more attention.
Bomedemstat is in trials for PV. Promising, will be interesting to see how it affects the mutation as the results accumulate.
I’ve not heard of needing HU and Rux at same time, I don’t think Rux was new in 2014, newish perhaps but I know that Dr V had patients on it for MF at least as far back as 2008
I dont think clinical use started in 2011 for MF, the link you posted says it was approved by FDA in 2011, but it was used clinically at least as far back as 2008. Dr V told me about patients he had on it back in 2008
Similarly if my memory serves me correct Pegasys may not be (or maybe has been recently) approved by FDA for PV but has been used clinically for a long time
Good point on the distinction. A good excuse to learn some.
I found that pre-clinical is before human testing while clinical is use with humans either before or after approval.
One distinction is Rux was "investigational" prior to 2011, and "approved" after that. And there is "compassionate use" and similar that allows use outside of a trial, during the trial period. That may be the category Dr V was using in 2008.
Another category many of us have used is "off label". PEG is still that for PV as is HU while Bes and Rux are on-label for PV. This can sometimes matter for insurance.
Hi there, it was my husband who took rux in the lead up to his transplant last year. I'll mention your post, he's on health unblocked as 67Red (or it may be Red67)All the best, Lisa
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