sjogens?

[Yanico]

I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23)

So took Pegasys for about 16 months

After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with glasses. I saw several opticians. Over the last year my eyes have been very puffy as well. I have kidney issues so assumed it was that but the nephrologist told me not. (So puffy my photo was not acceptable for a passport as “my eyes appeared to be closed”. )

I have seen 4 ophthalmologists and was finally diagnosed with dry eye 2 months ago and now have drops which are not helping with the vision or puffiness.

Due to the Pegasys could this be sjogens? How did your symptoms start? What were they?

I was due to see another ophthalmologist in September but due to NHS waiting lists I am still waiting.

im not sure if I can take any sjogens medication as I have kidney issues stage 4.

thank you

[EPguy]

-To your 1st question "Due to the Pegasys could this be Sjogren's? " Yes it is absolutely possible, but rare. For the 2nd question "How did your (Sjogren's) symptoms start?" my experience may be one you're after. If you feel up to it you can read my extensive posts over the last year.

-IFN can in rare cases lead to Sjo directly, this is in the warning label more broadly as potentially permanent "autoimmune disease". Sjo can also be triggered by a virus or a vaccine against a virus. IFN+ Vax was my route.

-You're 34 years and female, (from your prior post) Sjo most often starts in general this age group in women, Sjo is 90% women, and thus may occur for no obvious reason at all, ie without IFN or vax etc. For me a 64 years male, spontaneous Sjo is less likely.

-Did you have any infections or vaccines days or weeks before your symptoms started?

-Anyway eye troubles are a separate warning with IFN that may not be an autoimmune at all, and it's good you quit right away in any case. Did Dr find any retina problems?

-Your puffy eyes could be: "Blepharitis, commonly seen in Sjogren's syndrome patients, is the inflammation of the eyelids, resulting in redness, swelling, and itching. It can usually be treated by regularly washing the eyes with water or by using warm compresses and massaging the eyelids."

sjogrenssyndromenews.com/he...

-There are very many types of eye drops and treatments, so Sjo or not there should be something that helps.

-However- you describe only new eye troubles and none of the other countless Sjo effects. No dry mouth, correct? Joint pains, dizziness upon standing, neurological troubles, hard breathing etc. Sjo can mess with nearly every system in the body esp lung and sometimes kidney. A Sjo Dx needs more than just eye troubles. Unlike MPN where we look at numbers, Sjo is more subjective and vague, but for many, very life style limiting.

-Check out sjogrensadvocate.com/ The title says it all.

-You need to see a rheumatologist to rule in or out Sjo or any other autoimmune. *Be prepared for resistance to getting a Sjo Dx* , for many it is maddeningly hard to get Dr to agree.

-You will get an autoimmune panel that includes RH, CRP, SS-a, SS-b (SS is specific to Sjo) ANA and many others. But you can have Sjo while all these are negative (frustrating) A lip biopsy is often required when things are unsure. (if Dr is skilled it's simpler than a BMB)

-If you do have Sjo you've got one item in your favor, being female. 90% of Sjo is women, but if a male gets it it tends to be more severe (I can attest)

-Your question about Sjo medications, there really aren't any real treatments, unlike for MPNs. Sjo is at least 10 years behind the other autoimmunes in treatment, and maybe 30 years behind MPN. Plaquenil (HCQ) is the most commonly Rx for Sjo but it's mostly for joint pains and fatigue. I suspect it may react with Rux, one MPN member had a bad reaction and I got near instant tinnitus from HCQ. (there are no official reactions listed) Other treatments are palliative (feel better but fix nothing), mostly for dry eye and mouth, or organ specific.

-One small feel-good is there are finally many new drugs in phase2 and 3 that seem likely to actually work.

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My symptoms started right after my flu vax; strange pain in a knee joint, later shoulder pain that turned severe with Dx of Brachial neuritis. That slowly got better but not entirely. Then one night a strange weakness and fatigue. My mistake, which you seem to have avoided, was continuing the IFN as all this brewed. My Last Dose did me in as detailed in other posts. With episodes of paralysis etc eventually I got dry mouth, SS-a+ and an easy Sjo Dx.

But Sjo is too varied for any one history to illuminate much.

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[AnBee in reply to EPguy]

So sorry to hear about your very difficult path.

[Yanico in reply to EPguy]

Thank you for your considered response.

In fact I am 69. I was on Pegasys for 16 months and the eye symptoms started soon after starting but I didn’t connect them. I am checking my vaccines for dates. I have had a very dry mouth but this seems to have been related more to a 1 ltr fluid restriction and has resolved as i no longer have this restriction

I will look into the link you posted with interest and also try your recommendations

Thank you so much.

[EPguy in reply to Yanico]

Sorry for confusion on the age/prior post. The Sjo is dulling everything in me.

Hope you get more detailed info on the troubles.