Can anyone tell me what affect Pegasys has on the immune system.
A few tears ago I had a positive ANA and Anti-Ro blood test, was seen by a Rheumatologist who said I had Sicca symptoms but not Sjogrens.
Another recent blood test has shown the same, positive ANA and Anti Ro.
Now I am having more and more Sympoms of Sjogrens and am awaiting GP referral to a Rheumatologist. Am already waiting for MSK team, Orthopoedics, Gynaecologist and vascular scan appointments
I am already seeing a Opthalmologist.
GPwanted to put me on Statins but Haem said Statins don’t go with Pegasys, I cannot see any contraindications between Pegasys and Statins in the BNF
I am currently off Pegasys due to the pains I am experiencing which are actually worse than when I was taking it.
I would really appreciate some feedback as I am at a loss to know what is best with so much going on.
Regards Lynn
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lindyloulou
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The interferons are immune modulating drugs. They work by altering how your immune system works. Unfortunately, autoimmune disorders are one of the potential serious adverse effects.
I did not see any interactions between Pegasys and statins either. Suggest you ask the hematologist what the specific concern is. Perhaps discuss other alternative medication like Jakavi as well.
Thank you for your reply, this is what I thought to be the case, not too confident in my new Haematologist as yet. I am ET Calr, am I right in thinking Jackafi is not for my condition. I have been fine with ET for years now but unfortunately things are changing fast. Lynn
Jakavi is indicated for MF and PV but is used off-label to treat ET when other options do not work. It can be difficult to access due to the expense. There are still other cytoreduction options for ET like hydroxycarbamide and anagrelide. There is also the option of not engaging in cytoreduction and sticking with a blood-thinner only.
Suggest consulting with a MPN Specialist regarding your options.
Thank you again for your advice, I have an appt in Oct, will discuss issues then and go from there. I am in the UK so may request a consultation with Claire Harrison. Lynn
When i was on pegasys, I started having really bad autoimmune symptoms and needed to see a rheumatologist. I decided to switch back to hydrea and all my autoimmune problems went away
Thankyou, this is really interesting, I have always tried to avoid Hydrea as, I was 50 when diagnosed and thought it was too soon for me to take this drug. Was on Anag but didn’t suit me after a while, then Pegasys which as worked well for my ET, It is really a bit of a lottery as to which medications suit us. I will bear Hydrea in mind moving forward.
As mhos61 notes, I have too much knowledge on SS (Sjogren's) I am no longer active on MPN Voice but I still see the posts here. I apologize this long post is not directly on MPN matters.
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My 1st advice is Stay Off the PEG and do not Re-challenge with it. (try it again) Your body has given you ample warning. SS is un-treatable, (unlike RA) usually progressive, and normally irreversible and very often miserable. For many it degrades the entire body as I am finding.
The PEG label has this the severe black box warning: "Pegasys may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic" Besremi shares this. In some PEG trials there were 4-5% discontinued for immune issues, I've posted on that.
SS normally requires a predisposition to it and a trigger. IFN can be both the predisp and the trigger. Or the SS trigger can be an infection or a vaccine, or random bad luck just like getting MPN.
As you are discovering SS can put the MPN experience well into the background. If you had SS-a+ (anti Ro) and Rh+ and sicca your Rheum is incompetent not giving you the SS Dx. But on average it takes years to get the DX. One can even have severe SS with all factors sero negative.
Is your SS-a (Ro) level the same in both tests?
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My experience: On Bes for 11 months, did great, no liver reaction at all etc. Last Nov I got a Covid and later a flu vaccine as I always did. The flu vax immediately caused strange effects, then neuro troubles (I got a formal Dx of Brachial Neuritis) I had to switch to opposite handed computer mouse the following week from the pain.
The neuro symptoms lessened, and my IFN dosing continued. But then new acute general fatigue one night. My big mistake was taking that last Bes dose after this warning. I took a reduced dose, it caused immediate severe troubles. Zero dose was the right option.
In the following weeks I was housebound as what I now know to be SS quickly developed. It's ~1/10 in men so I am esp unlucky. I have a severe case based on its progression rate, and the Dx was easy. My former happy life is over. This severity is most likely from that last IFN dose.
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On a MPN sort of issue, my EPO has risen from low at my PV Dx (common) to just recently rapid rise over range. This happens only in non-MPN 2ndary PV or absent that, possibly kidney damage. I may have that, getting a scan next week. Example of the possible ravages of SS.
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Some SS cases are tied to interferon levels. My guess is those who get SS while on IFN are in this group. Adding more IFN is not a good idea.
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(Off MPN subject) If you're suffering classic SS symptoms, you should ask your Dr about the combination of Plaquenil (HCQ) with Leflunomide. IFN associated SS can respond well to HCQ. A small quality study showed a real benefit, to the combo and I had immediate improvement in salivary on low doses of 200/10mg respectively. HCQ is normally a mild medicine, Lef is less so. Unfortunately I'm intolerant of both so back to none. It's possibly interacting with the Rux but I'm even intolerant of the mild supplement Glutathione.
Two meds in phase 2 trials to watch are Nipocalimab and Isoaclimab. There is a third in phase 3, but it's not as exciting. I was rejected from that trial because of the MPN (cancer)
Also helpful can be acupuncture, I found a saliva benefit. But most practitioners do not have this specialty.
Thank you for your reply, I am sorry you are going through all of this and hope the future gets better for you.
Your information is very thorough and a little bit scary.
I have a haematology appointment next week, they took the first blood which showed positive Anti Ro and ANA test.
Unfortunately looking back on my consultant letters although the blood test showed these positive results the Rheumatologist only recognised the Anti Ro, missed the ANA result. I have the recent positive results from GP where the two results are positive plus a positive rheumatoid factor.
I will ask my haematologist exactly what the first readings were to compare.
I am currently off Pegasys at the moment but the symptoms I have a worse then when as was taking it. My platelets are rising so will need to take meds again, I will refuse Pegasys until we have all the answers to my symptoms.
I had my first Flu vaccine last year and have had all the Covid vaccines available, due another soon, I started with Sicca symptoms in 2020.
Your response is very informative and has prompted me to ask more question and get the answers.
I am awaiting Rheumatology, vascular scans, orthopaedics and gynaecology consultations along with already seeing Othalmology. Just to give you some idea of where the symptoms lie.
This confirms the fact that we need to be our own advocate and ensure we get all results and keep a close eye on these, I missed the fact the Rheumatologist had not recognised the ANA result.
Thankyou so much for responding, I wish you the very best for the future.
Sorry for the scary but it's the reality of this risk. I'm hoping all who are on IFN are ready to act quickly to stop the IFN if any autoimmune indications show up. It is most likely to be reversible when caught quickly.
You have one advantage being a woman. Women tend to get less severe SS, the uncommon man that gets it will likely get signif worse outcome. Understand on what/where your symptoms. I have one small good fortune that the eyes are ok so far, but the dry mouth is the worst part.
I have +SS-a but neg ANA, Rh. Being just SSa+ with symptoms is all you need for an SS Dx, so missing that ANA+ would have no bearing on the result nor status of the disease. So your Rheum should have given you the SS Dx anyway.
Please don’t apologise, it’s helpful to know these things, gives me a better idea of what questions to ask and more of a push to stay on top of any results. Mt GP is now doing the Sjogrens specific blood test.
Symptoms of dryness is a big issue for me, mouth eyes, swollen salivary gland,and skin. Pain throughout my body is a big issue also, cramps muscle bone nerve and vein. Strange sensations bother me also, numbness in hands and twitching in legs and shoulders in particular.
I am now seeing various consultants for. these issues, everyday something new seems to crop up.
I have a Haem appointment today, they want me to take Hydrea now not Peg, decision not made because of possible Sjogrens but my LFT. I had decided not to take Peg again anyway, thank you for your advice, it’s most welcome.
You have what they call "systemic" Sjogren's, affecting parts outside of the dryness areas. Most Sjo pts have at least some of this, which is poorly recognized outside those of us suffering.
Some of these symptoms can be helped by HCQ med. (Plaquenil) I hope your Rheum has some knowledge of Sjo, not all are well up on it. I tried the combo Leflunomide + HCQ and had immediate improvement in salivary. (there is a small study on this) But I'm intolerant of both so back to none.
Hydrea is likely your best option for now. Good thing is the LFT is near always reversible. I had a virtual visit with Dr Gotlib at Stanford and he said never again IFN for me.
I would return to Hydrea if my Rux disallowed some future Sjo treatment. Bomedemstat is good for PLT if/when it were avail but some the comments on the forum for it aren't so exciting.
On Sjo test, if you want full info on SS-a you could ask about getting Ro52 and Ro60 specific tests. These are less common but like getting early allele tests for MPN it may be useful future info for Sjo, There are others, I plan to ask for C3, C4 tests. These are part of the "compliment" system. These are often low, which is a negative prognostic.
As I'm finding, Sjogren's is full of obscure measurable details that we don't see in MPNs.
Understand on the long consultant list, my list goes past a web page. Pre-vaccine it was just the a few.
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