I am 4 months into Pegasys, and after trying to increase my dosage from 45 mcg to 60 mcg per week, I had problems with breathing, coughing, and itching being the most severe. Dr. had me skip a week, and itching subsided somewhat. Then I went back on at 25 mcg weekly. My breathing has continued to deteriorate, and I wondered if anyone else has had this happen. Seems like it might be Sarcoidosis, as I also have very dry irritated eyes. I see my Hematologist again in about a week. I am so hoping that this will pass, as others have said that side effects from Peg decrease over time. Just don't know if I can keep taking it if this gets any worse.
Sarcoidosis Peg side effect?: I am 4 months into... - MPN Voice
Sarcoidosis Peg side effect?
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dogsandhorses
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It does sound like you immune system is starting to fight you.I would start to think about asking for a larger pause to see if your breathing improves!also a referral to chest medicine for investigation.It maybe that like me peg is not for you
Thanks for your response! What side effects did you have, same or different? What did you have to switch to from Peg? I've done HU for almost 6 years, and the gastro side effects were quite bad, but at least I could breathe.
Hi I was allergic to HU , peg gave me neuropathy in hands and feet.
I think we posted each other before but I can't find. Your post 3 months ago said "they had me on 45 mg of interferon 3 times a week" This is the schedule for non-pegylated IFN. ie Roferon-A. Is that correct?
You felt the IFN was the cause of your neuro troubles. Are you taking any type of IFN now?
Only on blood thinners at the moment as I'm now under Guys who are testing at the moment.Had bmb this week. But yes I believe it may have been the IFN , I was take 45 mg every 3 weeks.
Not sure that the sero neg RA is marsking PV as local hospital originally diagnosed using blood as ET jak 2 . Guys have agreed to.do genetics on the marrow as well.As blood.
I love your name, that should be mine, I have 3 spaniels 😂 I have shared care under Guys, they are keen for me to go on Peg as currently just have venesections. I’m worried about the side effects but was told that it was the one with least side effects and best for me as in the younger age bracket ! I’m putting it off at the moment.
Peg was working really well platelet s came right down very quickly.Itching was non existent.It aS extended out to 3 weekly all going ok until the neuropathy.Guys ,was my choice for a second opinion and they have said due to.The autoimmune issues I have it wouldn't have been there choice.
I would give it a go.
I've always had spaniel s ,the current one is a cocker.Would love to have another but Percy is quite a handful!!
On the possibility you're getting a autoimmune (A-I) reaction, you should pause the IFN till you can discuss with a Rheumatologist. You GP may also be able order A-I tests. Some Hems are also up to speed on these risks, and at least holding off till that appt is my suggestion..
A-I is worst case IFN reaction noted on the label that can for some be irreversible. You can see my history why I watch the forum for these risks.
Thank you for responding. I was hoping you would see my post, and offer some info. I will ask my Hematologist who I see next week. He seems quite responsive to the things that I talk to him about. If he doesn't know about A-1 tests, I will talk to my primary care Dr. I had already decided not to take another dose for now at least. I doubt that I can take it anymore at all. Don't know where I will go from here.
You are paying good attn to your body, something I didn't do well enough. But i had the vax reaction adding to the confusion. You may have seen my post on the A-I tests I got, it's a lot but there are more, and likely some specific you your condition. A problem with A-I however is all these can be negative with A-I being present.
If you're HU intolerant and have this A-I risk on PEG, Rux is the next logical option. But it's off label for ET for now. You may have a case to try it if your Dr is agreeable and ok with the effort that requires.
From a quick search Sarcoidosi, if that is your A-I, s can sometimes go away on its own. A good incentive to hold the PEG to let it do that. Maybe if that happens a rechallenge at a low dose could work, something to discuss with your Hem. With my Sjogrens that not a realistic option.
My Dr. had mentioned that Rux would be the next thing to try. I just received 4 new vials of Peg, too!
My Bes supplier was eager to send more after my meltdown, and I had one left. Doesn't mean you must use it. I recall Bes was good for ~ one year unopened. If PEG is similar you've got time to decide.
Great your Dr is ready to help you access Rux if you go that way.
What is A-I tests?
Autoimmune (A-I). Antibodies normally attack invaders like viruses, bacteria etc so they go away. With A-I the body's antibodies attack things in us that don't need attacking like perfectly good organs, nerves etc.
It comes up on this forum because IFN can cause these A-I diseases to arise, sometimes very quickly.
There are various blood tests and others (A-I tests) to check for these "autoantibodies". But diagnosis can be hard.
O.K. I know it. We should be checked for it because 8f taking Besremi is a big risk. Thanks
It's a rare risk but with severe consequences. And not as rare as I thought in the past.
I think so, it is not as rare.
Hi dogsand horses and EPguy,
What EPguy said is exactly what I came here to say.
I do have to ask, why was sarcoidosis even in the initial differential diagnosis?
Because while it's not truly rare, it's also not exactly very common either.
Did you have labs that showed autoimmune issues [CRP/ESR/ANA, RF, etc.]?
Was there imaging that suggested sarcoidosis?
BTW, while I don't have any horses, I do have a dog that seems like one, and is actually bigger than my S-I-L's mini-horses. She's a 3-year-old St. Bernard, and the only dog we've had that was bigger [taller and longer] was our Irish Wolfhound.
Best regards,
PA
breathing difficulties and coughing are symptoms of sarcoidosis. Perhaps you have a flare up ?
I never had this problem before Peg. I feel sure it is caused by the Interferon, but wondered if anyone else had experienced it while on Peg.
I had breathing problems after 5 months on Peg but not the other symptoms you mention. It took 3 hospital visits until severe pneumonia was diagnosed and was recognised as a rare side effect of Peg. So if your breathing is getting worse don't leave it but get it checked asap.
Thank you for the response. I will get it checked.
I've been on peg since January and my breathing started to get bad few months ago. My haemotologist is useless, didn't even know it was a side effect until he looked it up on my insistence. I've had a chest x-ray and it's showed what they said was inflammation in the right lung. I've had antibiotics to no avail. Getting another x-ray in 2 weeks time. I've no other side effects but the poor breathing. On 90mcg a week but I've reduced it myself to 60. Don't know where I go from here.
Mine started with a tight chest for about a month and then suddenly deteriorated. First hospital appt - sent by GP - showed nothing despite xrays and CT scan. Sent back following week as running a high temperature. Given antibiotics and sent home. Haematology was phoned from medical assessment unit but didn't see me. Week later, by which time I'd finally been given pamphlet with telephone no to contact haematology direct, I was taken in with very high temperature,fluid on both lungs and round heart. Taken off Peg immediately and it took 5 weeks on/ off hospital admissions with oxygen, many different antibiotics and eventually steroids as well till I got better. To give them their due the whole haematology team worked at trying to discover what was wrong with me but in the long run Peg got the blame. Peg wrecked my immune system and now on Ruxolitinib. It was a shame as a low dose (I started at 90 and was reduced to 45) was controlling my platelets after HU and Angrelide stopped working and obviously as seen on this forum many people have success with it though a year or so ago someone else reported the same problems as I had. I was under a MPN expert on Peg but the side effect just hadn't been seen by any of the team before. I hope you get to the bottom of your breathing problems. Watch your temperature.
I've got a 2nd chest x-ray on the 27th, as I said the first showed what they thought was inflammation in the cardiophrenic region in the right lung. I'm due to inject today but I'm going to leave it as I'm pretty sure it's all down to the peg. Been trying to get to speak to haemotologist but to no avail.How are you doing on Rux ?
I've been on it over 7 years now. After the Peg debacle my platelets stayed down on their own for nearly a year then I had to start on Rux. It brought both my platelets and spleen down satisfactorily. I haven't put on weight but anaemia, which had been a problem for years, persisted so also have EPO injections. I can't have transfusions as have had too many in the past. It is not working so well now as spleen has increased again so dosage doubled. Infections are a problem as rest of family's common colds turn nasty on me - don't know if that's the Rux or caused by Peg knackering my immune system. However all in all I'm glad to have it. Could you ask for a second opinion ? I fully appreciate that is difficult. Do you have a sympathetic GP who might help with this?
I think we know when a drug is making us sick, or feel off. The Drs. only know what they are supposed to have read, or what other patients have experienced and reported to them. I am not going to inject for awhile. One of the responses I saw on here, the person waited 6 weeks to get clear from the side effects, and then started back at a very low dose administered less frequently, and it worked for them to do that. I'm going to do something like that probably, or switch to Rux. I have a good hematologist, so I will discuss with him. He also consults with the MPN specialist who is in a neighboring state, and referred me to him.
That sounds like a common sense approach to me and one I'm going to use to the haematology team. I know peg builds in up in your body so 6 weeks at least to clear, although sarcoidosis can take months and even years to clear. I'd just like answers so I can get on. It's hard when you're struggling to breathe and everything is an effort.
I have not been on interferon, so have no experience to comment. Sorry
They could also be signs of bronchospasm without requiring any A-I issues otherwise, though.
Proper breathing exercises, coconut in the morning to clean your mouth, etc. It is good for me. Good luck
Coconut?
Yes, organic oil coconut a teaspoon before going to the bed with 3 drops of organic oil oregano for 10 days once each 3 months, more or less. And when I get out of the bed only organic oil coconut. Garglering at night and in the morning and spit put it because it cleans bad bacteria which can provoque some breathing problems. But, the most important is taking care of your microbiote. This is also essential to have a good health. Having patience is the key. It works for me. But, you must take care of circadian rhythm and nutrition, exercise, weight, etc everything in your life because the air polluted is also important. Good luck!
Very interesting. I will have to look into that. Wouldn't have thought of it all on my own.
You must be constant. I overcomed this problem with time because nothing was found. Fingers crossed.
Hi there,Sarcoidosis is a very tricky customer. The symptoms align with so many other medical conditions. It took over a year of many tests to get my diagnosis.
The most conclusive way to be diagnose if you have this is a scan to see if your bilateral hilar lymph node (yeah, I had never heard of this either) that sits between your lungs is enlarged. Even then something else could be causing the enlargement, so it is a patient process of elimination.
I am on the cusp of starting Hydrea due to my age, but am pre medication, apart from Asprin.This is only my journey and I am sure others may have a different story to tell re their sarcoid experience.
I have triple negative MDS/MPN crossover (diagnosed 2020) and it has not triggered Sarcoidosis to date which appears to have been dormant since 2013.
I hope this helps and your hematologist can eliminate your concerns with a lung scan if your symptoms persist.
I wish you well in getting some relief from your symptoms soon.
Thanks for the response. I appreciate the information.
Hello Dogsandhorses,
I'm so sorry to read about your reaction to Pegasys.
I don't really have anything important to tell you, other than to say that I am on 45 mcg of Pegasys, but fortnightly. I was on it weekly then haem team changed it as the weekly dose made my platelet count too low. Now it's stable in the good range. I used to inject in the morning but now inject before bed as the side effects in the morning made me feel like crap. I was tired and very sleepy. I had the itchy skin when I first started but that stopped after a week or so. Injecting before bed means any side effects do not affect me whilst I am sleeping. This has really worked for me.
The only other side effect I think I am having because of Pegasys is the right side of my belly where I inject seems to be swollen where it wasn't before. My heam team say they don't think it's due to Pegasys because they've never come across that as a side effect before. My GP sent me for an ultrasound plus an internal scan but nothing was found. It seems to be in the layers of the skin. SO I now inject mostly on my left side to see if the same thing will happen on that side to balance it out.
I hope they can find a solution for you very soon. The experiences of those here in this forum are very valuable, so use it to question your medics.
Good luck!
LadyA
Thank you for your insight. I always get a rash on my belly from the injection. I figure that's just part of it.
Hi dogsandhorses I am sorry to hear of your problems with peg, I am only 2 weeks in and notice I cough a lot the day after my jab and now have aching legs in the evenings even though I do yoga and dog walk. I also think I’m itching a bit more than usual. Not much help I know but wanted to say you’re not alone. Hope you feel better soon. Mel x
My breathing issues, are accompanied by a dry cough that I never had before. My legs ach from the knees down, and I get foot cramps like crazy at night. I also itch quite a lot. Started with my head, and back, and now it is more widespread. Hope we can both overcome these things to get on with it!
Me too. Bathing in Epsom salts helps with the leg cramps but doesn’t cure them and a magnesium supplement before bed makes it easier . Mel x
dear dogs and horses
I’ve had a similar situation with Besremi. I started with a skin rash which went away with antihistamines. After three injections, it was gone completely. They slowly raised the dosage within nine months from 50 µg to 200 µg. All of a sudden I started having pain in my joints. That would go away after a week. At that time my thrombocytes plummeted to 250 for the first time in 18 years. I was happy despite the discomfort.
then I realised 3 to 4 days after every shot the pain would slowly creep in and become worse than the time before. We reduced the dosage again and again. Then I had to stop because the pain was excruciating, especially in my feet and every single joint of my hand starting from my wrists. I could hardly open my fingers in the morning.
I stopped Besremi for two months. Thrombocytes slowly climbed to 550. I took a 50 µg dosage. OK. I did that three times and my bloods stayed at 550. I decided to try 75 µg. mistake. The problem came back. I waited a month started at 50. Good. 2012 for three injections and then my body exploded in pain. I stopped completely. it’s been six weeks and I’m finally symptom-free. I’ve been on minimum. Anagrelide treatment which has caused me heart problems.
It seems like the interferon had my immune system attacking all the places in my body where I had had previous accidents.
A very important point is that I do everything possible to keep my immune system balanced for the past seven years. Unfortunately since last summer, I have been travel a lot and haven’t been able to eat organic or always avoid grains and sugars and milk products. I was also lazy and taking my supplements. I have autoimmune thyroiditis which has not gotten worse. The skin itching and rashes also also returned right before I stopped further treatment. I had had eczema for 35 years which had gone away with my lifestyle changes .
the bottom line is to keep the immune system as stable as possible and as quiet as possible.
hope to have helped somehow. Anag
I'm worried about what is next. I don't know that I can continue with this course of treatment.
I’m back on Anagrelide, which has the least amount of side effects. I really do have to take something because my platelets will get very high. If you’re not taking any therapy, what would be your platelet count? Take just aspirin all the way up to 1000 platelets.
another thing that I found helped my body enormously slow down the illness and stop it from getting worse and that was going on the odd immune Paleo diet, detox my body from heavy metals over a long period of time, and basically removing everything that was causing the inflammation. This also helped me tolerate the interfere on for a long time. Last year I started cheating on my diet and was overtired myself, which was taxing my immune system. That’s when the symptoms started.
on where you live the doctors will have other treatments such as bloodletting during difficult times.
please try to get to an MPN specialist. Not just a haematologist. Most are just not good enough.
my MPN specialist says that there are a couple of promising new therapies coming in the next 2 two years and a bit. 🙂
as long as there are alternatives, you are OK. But you have to get to them.
I do have an MPN Specialist. He is in a neighboring state. He sent me to my current Hematologist, and they consult. My platelets went to over a million when I went off of Hydroxyurea before starting Peg. I don't think my MPN Specialist thinks aspirin is enough. I used it as a stop gap before I got Peg. I know I need to be more careful about my diet, but I also have to cook for myself, and my husband, who is a BIG eater!
great that he’s a NPN specialist and that there’s communication! I always have to be on blood thinners because I’ve had six light TIAs. Because I was having problems with anagrelide we tried to keep the dosage as low as possible without going over 780. I was a jumper. Between 500 and 900. I had to get tested every week. Once I got off the anagrelide and was on interferon the most incredible thing is that my platelets were not jumping around anymore. They were absolutely stable for almost 2 years!
With just a bit of blood from the finger once a month. If I was up, I would take one more pill a day if I would take one less. Spread out over the day. There are always solutions if your doctors are creative. we are at home and I cook amazing, delicious and nutritious dense foods with lots of excellent Olive Oil directly from Greece. Can’t get more organics in them five generations. When I make carrot soup, I make it and for 15 bowls and put the soup in big jars ready to go even a month later.
hamburgers made with lots of chopped onions, some chopped oats salt pepper herbs I make so we always have something to eat
when I make goulash and vegetable pots concentrated a bit of extra salt and lots of olive oil for energy. Lots of garlic and everything! I am Greek therefore it’s easy to cook huge amount all gets put in big jars sealed. Goulash keeps up to 2 1/2 months. Same with Greek lentils. Greek beans. The pulses have prepared by sprouting pre-cooking getting rid of that water and cooking properly. No gas.😃😃
my 6’6”, 350 pound brother was here and I always had enough food. 😂 Where there’s a will there’s a way just need a lot of refrigerator. Space. My 20-year-old daughter also lives at home.
There is hope and you should look forward to new solutions instead of racking your brain. The most important thing is quality of life!!! we need to live the lives that we have and live them as well as possible. Answers will come for you.
🙂
I have had pulmonary sarcoidosis for 18 years and it forms granulomas in lung tissues when your immune system goes haywire and attacks healthy cells. That came first. The ET came 8 years later. I started PEG about 6 months ago and my sarcoid consultant wasn't overly concerned about it exacerbating my condition at all.
I did have terrible itching when I started PEG and it has improved no end the longer I've been on it. I was on the higher dose (135mg??) but I'm now on 90mg weekly and the itching is much less.
I would say that I've had hay-fever for the first time this year which has made me congested with itchy eyes and croaky voice.
Hopefully things will calm down for you but if your breathing is bad you may have to have a chest xray but I was told that Sarcoidosis is not always visible during a normal chest xray but more visible on a CT scan. I was diagnosed in 2006 by a Mediastinoscopy and biopsy.
Hope this helps x
Wow! That's both good news, and bad news. Seems like that's what out journey is all about.
I hope I don't have Sarcoidosis, but it sure feels like that's what it might be. I will find out. Thanks for your response.
I hope you haven't either but best to get these things checked if you can
I've been on peg since January and my breathing started to get bad few months ago. My haemotologist is useless, didn't even know it was a side effect until he looked it up on my insistence. I've had a chest x-ray and it's showed what they said was inflammation in the right lung. I've had antibiotics to no avail. Getting another x-ray in 2 weeks time. I've no other side effects but the poor breathing. On 90mcg a week but I've reduced it myself to 60. Don't know where I go from here.
I don't know either. I reduced mine myself to 25 mcg. Still having trouble, so either try every 2 weeks, or change medication again. Only thing left is Jakafi.
I was on 45 weekly Peg felt awful. Taken off for 6 weeks then on 30 monthly for 6 months & fine. Now 45 monthly & working well no side effects. However it took the expertise of MPN to sort treatment . We are all different. If in UK Guys Hospital & Professor Harrison’s team are excellent in sorting medication problems . 👌 Julia .
Thank you so much for your response. Gives me hope that I may be able to work this out. I do have an MPN specialist, but he is working with my local Hematologist as a consultant. I will ask that this issue gets run by him.
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