I would like to know if anyone had any migraine and neck stiffness issues? I thought I was doing so well only a few weeks into Peg but the other week I had 5 migraines, 4 in one week and 3 in a row, which is more than I had before diagnosed with PV... my counts are brilliant. I had some iron which took well, my platelets literally 420 from being over 700 for years, but yet if this is a side effect then it is ruining me, I literally can't do anything and although I am self employed just been signed off work etc... don't want to be doom and gloom want to be positive it's unrelated and it will pass, sadly I got another migraine at 5am yesterday and I get aura and the hangover is awful, I can just about type this but I can't read it. blurred vision is so bad..... I always get an aura.. I also noticed last night a mouth ulcer - I have tried not to look at all the side effects as then I believe sometimes you start having them all... I was on 45mg Peg every 2 weeks but now decided with team that I would go every 3 weeks.
Peg side effects: I would like to know if anyone... - MPN Voice
Peg side effects
Hi, I am on Peg Ineferon Alfa 2 now for about 3 years and am on 135mc every three weeks. I have all side effects, migraines, blurred vision, stiff neck, pain in my bones, muscles, dizzy spells, depression, anxiety, etc.... Some time those side effects are more intense then other times. I have to stay in bed for a 2-3 or more days. I usually take at 5pm, paracetamol one hour before injection and I have injection at 6pm to make easier with side effects. So depends on the intensity of pain paracetamol helps and if it is very bad I take Tramadol too.
Peg controls platelets I have ETJak2+.
I hope that this helps and I wish you well.
wow that sounds awful have you not thought about a different medication - I can't cope with being unable to function
No, because it is every three weeks for few days or so...... but it controls my platelets.
Still that’s a lot to go through if other options might be less painful. My platelets never bothered me it’s the fatigue I was trying to get on top of but not expecting to get migraines or feel worse. It’s been over a week and I can’t not work for weeks so think I may stop the drug and go back to managing it naturally.
I love that idea (manage it naturally). I asked my doc a couple years ago what are the symptoms of too many platelets. He said: tingly extremities and an enlarged spleen, and risk of stroke. So later I asked how many people who get strokes because of high platelet counts have an enlarged spleen? He said nearly all of them. He wants me to keep my platelet count under 400, but we bargained and it's my body anyway. When he originally diagnosed me, he said it's a problem around a platelet count of 1000. I got on meds (hydroxyurea, "Hu") when I hit about 950. My spleen has never been enlarged.
I stop taking Hu when I get sick so I get a boost (Hu suppresses bone marrow activity, which includes a lot of immune system stuff, like making white blood cells). So I was off it for two weeks about a month ago. My platelets went from 499 to 916. I had gotten healthy so I started on the Hu again and two weeks later, my count is 599.
Until I have an enlarged spleen, I view taking the Hu as a safety measure. I keep taking it, but really I think I could do with half the dose I'm on, and I'd really like to have or at least know about some symptoms of "too many" platelets so I know what to watch out for.
There's a group of nurses responsible for calling patients after blood tests and one of them recently said to me "You're the first person we've ever heard of who has been able to manage platelets with their diet." Of course, I'm also using the Hu, but I've cut my dose from 11 pills a week to 8, and this last drop from 916 to 599 suggests it wasn't really my diet, but my 10-day fast because during the two weeks when it dropped, I was eating some meat (sorry Surreygirl) and bread and just eating healthy in general, which I was doing before. On the other hand, before my fast, I restricted my diet to just fruit which also caused a big drop in my platelets, so that could be it too. I like to think "only eating fruit" and "not eating for 10 days" both reduce my need for Hu. Really, I'd like the no eating thing to pan out as a cure. Starve out the extra platelet factory cells ("megakaryocytes").
Hey really interesting so I have a slightly enlarged spleen and was never told it was a risk and also I have had platelets sitting around 700 - 800 max was over 900 and never really felt that affected me at all. Obviously taking aspirin can prevent strokes. I only went on drug therapy because the fatigue was for want of a better word killing me.. I also lost blood in bladder op last June and to be honest my body just felt like it had been struggling since then, bearing in mind prior to that I was running 10k races and generally very very active. My iron and ferritin always been what I deemed the issue with the fatigue but having spoken to the fatigue clinic the bladder cancer which I kind of don't really think about could also be contributing and I guess there is a lot going on with us all. I am going to see how I feel but I had a cup of coffee today the first in 4 months and I felt better strangely.. so who knows so many things bad for one thing good for another.... I met a lovely lady the first ever diagnosed with ET in UK and she never had any drugs and her platelets were well over a 1million and she inspired me to avoid drug therapy for as long as possible. I wish there was a natural cure or preventation or management forever. But if I am feeling worse on the drugs than before then for me it's a no brainer to go back to the venesection and aspirin and manage the fatigue and adjust my life a little. I have accepted I won't race again sadly, but want to focus on more meditation and yoga anyway 
I have some great things about fasting but not sure how long I could do it for
The logic of the fast is that evolution prepared us to deal with starvation by prioritizing the order in which we metabolize our own living cells. This means that maybe my megakaryocytes are high on that list because I have so many platelets, so fasting for 10 days may have actually caused me to metabolize some of the extras.
That idea is from Joel Fuhrman's book, Fasting and Eating for Health. He also states "Do not treat cancer with fasting," but does not offer any reason for that prohibition. I have a rather jaded view of conventional medicine, and that lovely lady, your "natural methods" and my experience just bolster that view.
If you haven't been trying orange-and-spinach smoothies and other natural foods that raise iron levels, try it.
The caffeine connection is interesting too. I found a study on Hydroxyurea and caffeine that found that the famous cells (of that woman who had (cervical, I think) cancer) that can reproduce indefinitely die more readily when subjected to Hu and caffeine. My wife has been buying me chocolate covered coffee beans to help with the slight fatigue and depression that I notice from taking Hu, so that was a neat study to think about.
Anyway, we have only about a century or two on this rock, so enjoy it as much as you can :-). On that note, a friend of mine and I are going to make a plan for world peace. If you'd like to join us, let me know.
Hi surreygirl hope you feel better soon funny you should mention a stiff neck I have noticed that the day after my injection I get a bad neck at first I didn’t think about it but over the last few weeks it’s happened I realised it goes after a day so can’t be a bad neck . I have always had lots of headaches and migraines still do but can’t say they are any worse I am on 45 mg a week and bloods are good so far . Hope changing to every three weeks will help you migraines are dreadful I know I have taken all sorts of treatment and some times only aspirin helps. Stay strong best wishes Poppy
If it was just a day or two I could cope, this was horrendenous migraines and I still feel the hangover from them... I am at the point of giving up on the drug altogether. Thank you for your help. x
Try Co Q 10, that helps me with migraines. This was given to me by doctor and it works.
There are lots of things but if the drug is causing this amount of pain and fatigue and potentially damaging side effects I would rather not take it. The side effect listed with stiff neck and ringing in ears and headaches is a serious one so I may have to stop taking it sadly! Shame I had such high hopes
I like light's suggestion. If you're game, you could do experiments with migraine/stiff-neck/fatigue/ etc therapies (we all know that traditional medicine mostly ignores non-pharmaceutical therapies) to see if any of them tend to block that effect of the Peg.
One of the things that keeps coming into my mind is the cleansing effects of eating a lot of fruit. A friend of mind did a two-week grapes-only diet once every three months for a year or two (or five?) and eventually stopped because, her husband says, she was finally clean.
The pain-causing SIDE-effects of Peg might be susceptible to being prevented or attenuated by something that doesn't also block its platelet-reducing effect. Suppose you found that something? Rock on, SurreyGirl!
I lived most of my life trying to find a cure for my migraines sadly and the cure was being diagnosed with PV and having aspirin and venesections.. then I started getting some hormonal migraines had some accuputure etc got better but the the last lot recently I wanted to put down to Hormones but I am now not sure - I guess I need to find out but I know of all the herbal, natural and diet related methods they do not help my migraines.. getting to the root cause was all that helped then and so the way I see it, is if this drug causes migraines then simple solution is stop the meds...
I can fully sympathise with all your side effects I am currently having a bad time on pegasys also 180ug pr week, really bad headaches, painful legs and neck,total exhaustion etc, I have not had a migraine yet but I had them everyday on anagrelide with aura, hopefully I have been told we might get used to it after a while I hope so or I might have to quit this option also.....
Gosh is that a strong dose each week? bless you. Interesting you had them with anagrelide... I guess with all toxic chemicals we may have some side effects but it's the measurement of those side effects versus the benefit.. migraines are a killer, I couldn't work. so for me it's a no brainer, if it is the drug, come off it.. not sure how long it will take to come out of my body? Any ideas? I do hope you start feeling better soon
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