Essential Thrombocythemia

[GRATHNOR]

I was diagnosed with essential thrombocythemia 25yr ago. I was put on interferon which worked with no side effects. My oncologist then put me on Hydrea and took me off Interferon about 7 yrs ago. Recently my right foot burst out with painful foot ulcers and what appeared to be skin and ear cancers. I ceased the Hydrea for a month and everything began clearing up. I was then put on a weekly dose of 135mg of Pegysys. After 2 weeks severe pain kicked into my shoulders, wrists and hips where I could no longer function. Bursitis and arthritis were eliminated as the cause. My oncologist halved the dose and to a fortnightly basis. The pain has decreased to a point where I can function again, but there is still low level pain in those areas. Hopefully I can find a treatment that will make me pain free.

Thanks for listening.

[Scottishterrier]

Hi grathnor when I was put on Hu I was also put on a drug called allpruniol because my consultant said sometimes a side effect of hu was gout am lucky never had it as I heard my neighbour had it and said it was very painful I would get it checked out by your GP and see what they say Stay safe

Scottish terrier

[GRATHNOR in reply to Scottishterrier]

Thanks for that. I was on allopurinol for gout treatment but was taken off it. No effect whatsoever.

[hunter5582]

It sounds like you have been through the adverse effects wringer. Sorry to hear you have had this experience.

Most of us start on 45mcg Pegasys when treating ET or PV. While PEG can be very effective, it can have adverse effects like arthralgia and myalgia. The fact that your symptoms reduced on a lower dose speaks for itself. You may find you need an even lower dose.

Wishing you success moving forward.

[GRATHNOR in reply to hunter5582]

Thanks for that. My oncologist has increased my Pegysys dosage from fortnightly to weekly as my platelet count is going through the roof on the lower dosage. I have a bone marrow biopsy due soon, that may allow me to get a new medication. Fingers crossed.

[GRATHNOR in reply to hunter5582]

Thanks for ur input. With the lower dose of Pegysys my platelets are going through the roof. The high dose keeps my platelets in check but the pain cripples me, so I'm in a bit of a quandary.

[hunter5582 in reply to GRATHNOR]

It may be worth reviewing your treatment goal regarding platelets. There is no evidence to support setting the target as PLT<400 for all patients. Some MPN Specialists use 600 when a number is used. silvermpncenter.weill.corne... Others use the delta (degree of change) to set a target. While there there is not a linear relationship between platelet levels and risk of thrombosis, there is a linear relationship to risk of hemorrhage. Excess platelets raise the risk of bleeding/bruising. At very high levels, there is a risk of Acquired von Willebrand Disease.

Hope you get a plan worked out soon.

[EPguy]

Were you taking interferon 25 years ago? That likely was Roferon or Intron A. It's taken daily or every few days. Why did your Dr take you off if it was working?

Pegasys or the similar Besremi are taken weekly or monthly. It's supposed to have fewer adverse effects than the old IFNs with a more even drug load in the body. If you stay on, trying the lowest dose that holds your PLT counts is a good start. 45mcg is common for many members as Hunter notes.

Beremi is not yet approved for ET, and Pegasys is now in shortage in many places. If you were on the the old type and it was working, could you try it again? Intron A is no longer made, but Roferon is.

[GRATHNOR in reply to EPguy]

Thank you for ur advice. We're currently searching high and low for Pegysys. Hydrea is definitely out. My oncologist has increased my dosage from fortnightly to weekly so we'll see how that goes. I have a bone marrow biopsy soon to see if I am able to get a govt sponsored med to deal with my problem.

[EPguy in reply to GRATHNOR]

I posted today a phone number for the PEG mfr. I don't know if it will help but it's their direct contact.

If you increase the dose frequency that would use it up faster, unless you're splitting the doses. Some members are reducing the frequency to stretch it longer. Did you ever take the older IFNs?

[GRATHNOR in reply to EPguy]

Thanks for ur advice. I've asked about going back on Interferon but I've been told that it's no longer available

[EPguy in reply to GRATHNOR]

The old style (non peg IFN) is still available as Roferon. See label here. It seems you were on IntronA, that one is no longer made.

assets.roche.com/f/171341/x...

I can't advise that Roferon is right for you but you can ask your Dr about it since it is an option. Unlike Intron powder, it's provided as a solution ready to use.

[Nerjalover]

is your oncologist an MPN expert? This is so important.

[GRATHNOR in reply to Nerjalover]

I don't know if he is. I'll have to ask him. Thanks for that.

[Hopetohelp]

when I was on Pegasys I had shoulder, neck and back pain for a couple of years. Nothing seemed to get rid of it but when I took a slightly lower dose of peg it went away. Came back when the dose was increased slightly. Didn’t make the connection until I finally stopped peg and pain now gone. I would suggest explaining to your haematologist. Maybe you could let us know how you get on. Good luck

[DiveGoddess]

Thank you for sharing this experience. I have not taken Hydroxurea but was asked to, I declined. I am on Interferon now 2 years. Have more joint pain, did not think about if it could be related. I take 150mcg monthly. Hope your aches and pains improve.

[GRATHNOR in reply to DiveGoddess]

Hi. I was on Interferon with no complications. Both Hydrea and Pegysys had terrible affects on me.So much pain. Hopefully we'll get it sorted soon.

Cheers

[EPguy in reply to GRATHNOR]

DiveGoddess here is referring to the new type interferon (Besremi in this case). It's confusing as you are one of few or only member that has a long history here with the old type interferon. Most members here are not familiar with the type interferon you used.

Both are the same medicine, (Type 1 IFN-α-2 ) but Pegasys and Besremi have additives (Pegylation) that make it last longer for less frequent dosing, (Type 1 IFN-α-2 + Pegylation), hence DiveGoddess's once per month dosing. You might be intolerant to the pegylation additives in Pegasys.

Another good reason to ask about Roferon I noted above.

If/when Besremi becomes available for ET it might be worth a look; it also has a pegylation additive, but it's a different type additive than used in Pegasys.

[Fandango_1]

Hi Grathnor,I' m Gian Piero from Italy.

Thank for your post

My wife has ET Calr 1 mutation.

.

Just 3 questions:

How old were you when started with IFN?

Which kind of ET mutation do you have?

After 25 years, still is ET?

All the best