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[Patchworklife]

Here I go again! Nine weeks and four days into treatment with Jakavi for MF I am experiencing some headaches, cold night sweating after three hours of sleep as well as weakness when walking and breathlessness. Is this normal?!

[Inca]

Well I am the same,think I am about same time as you on Jakafi...my consultant is changing me to 5 morning and 5evening instead of 10 at night mgs I mean!! Think I have more energy mornings but after that I am tired ,then the hot and cold sessions.Sally

[Hidden in reply to Inca]

This mirrors my experience on Jakavi. Spleen reduced in size and platelets to best level in almost 30 years quite quickly after going on it. Night sweats took a bit longer to disappear. Anaemia was still a problem after 6 months - dropping to 75 every 8 weeks with attendant breathlessness etc. - so had to have transfusions. Drug was reduced to 5mg twice a day and now transfusions only every 12 weeks at about 85. However I was transfusion dependent before starting Jakavi which might explain why I haven't been able to shake them off as many people do. Been on it now almost 18 months.

Generally, though I don't feel exactly a "new woman", I am a lot more able to cope on a day to day basis and feel distinctly more clear headed - not a wonder drug but an huge help compared to previous drugs and I am enormously grateful now to be on it. I really hope Patchworklife it settles down for you - the breathlessness is debilitating and at times frightening.

One helpful piece of advice came from a family member who is a physio. I complained that if I was very busy one day and feeling smug that I had done so much, the next day I was wiped out and feeling a bit sad, especially if I'd just had a transfusion and should technically have been feeling much better. She explained that in her practice she often refers people to "the spoon theory" as a coping strategy . Quite lot of sites dealing with chronic illnesses , eg lupus/ fibromyalgia refer to this and I think it equally applies to us:

thrivetalk.com/spoon-theory/

I now tell family friends about it to help explain why I seem able to do the gardening/shopping/cleaning/socialise one day but am too tired or breathless the next and have to rest. Hope this might help.

[Wyebird in reply to Hidden]

You are so like me an all or nothing person. Two gears. - top and stop/ reverse. My heamoglobin is higher than your approx 104( I’m et Calr) we have to learn to pace ourselves.

[Patchworklife in reply to Hidden]

Thank you so much.

[socrates_8]

Hey Patchworklife...

Sounds about right to me... However, you might find that some of your symptoms dissipate given some time...

My pruritus was almost immediate in the way that it ended - Yay!

However, again, cold sweats are always w/ me. Headaches and light-headedness seems to cycle around almost always. As does anaemia, fatigue, and sometimes there is nothing to do but take a break from everything and just try to sleep... for as long as needed.

I am 25mg b/d and have been for some time now. Occasionally, I revert back to 20mg b/d, but then invariably my platelets start climbing again, and my dosage increases once more...

Nevertheless, all in all, I feel much better on Jakafi as opposed to Interferon and HU. So, it's a compromise in my view, and Jakafi seems to work best all round for me... But, we are all just a tad different to...

Best wishes

Steven

(Sydney)

[Patchworklife in reply to socrates_8]

Thank you Socrates for your comprehensive response. It really helps! The itchiness (hot showers! Yay!) and severe referred pain from my spleen quickly disappeared when I started taking Jakavi but I am shocked at how debilitated I feel with the anaemia. But it is useful to know that others are coping with this. I think the information about side effects should make clear that anaemia is alarming.

[socrates_8 in reply to Patchworklife]

Yes, anaemia is a real issue unfortunately. One of the specific roles the medication has is to help suppress our immune systems. Unfortunately, however, in do so, it also increases our levels of fatigue.

My spleen is just starting to feel a tad larger again these days but still only just slightly enlarged and slightly uncomfortable at the present etc...

Hang in there...

And live everyday like it really matters...

Steve

[JediReject in reply to socrates_8]

Here here Steve, it's too easy to get wrapped up in ones symptom burden etc that you forget or feel you can't live your life. I know I spent many unfruitful months doing just that. I don't mean wallowing in self pity but perhaps just feeling consumed by it all and the effect can kind of hold you back. I think I was fearful of making things worse if I overdid it. Hard to express but hopefully you and the other good folk here will catch my drift.

I might add it's hard to break free from when you're experiencing it and perhaps you just have to live through it until you find your own level. But I do wish someone had guided me early on and saved me many wasted months of turmoil.

Regards to you Steve from Up Over ? . . Chris

[socrates_8 in reply to JediReject]

Hey Chris...

How are you doing you old pirate?

Great to hear from you, and I just want to add to what you have said in above in many ways...

Chris, you were here when I first started out on MPN Voice, (now 3 years ago come May). You were and remain a great inspiration to me, and to many others here w/ an MPN.

You helped me realise my statements above Chris, and I am very shortly about to announce some great 'action' news that I have been harbouring now for some time...

To me these days, I realise that every second of life is so very precious, and I/we should all live it like there is no tomorrow, just right now, right this moment! Life is always beautiful, as like as we keep looking for that beauty... in my view...

Best wishes buddy and I will PM you shortly to pass on my good news.

Steve

[JediReject]

Hello Patchworklife , , I must say Jakafi was a Godsend for the majority of my PMF symptoms , , including the night sweats , , the only thing it didn't touch was my massive spleen in terms of reducing it. But it may have halted it's growth? .

It could be your Hem needs to adjust your doses or use it alongside something else. It is a concern when you are anaemic , I had a couple of transfusions during my relatively short time on it (15 months or so) but was told that too many weren't a good option if I was going down the SCT route at some point.

I hope you manage to find a happy medium in all this because I still believe that Jakafi offers the chance for the majority on it the chance to regain control of and to start living their lives virtually symptom free. Let's hope you find the dose that suits you and doesn't leave you anaemic.

Regards - Chris

[Patchworklife in reply to JediReject]

Thank you, Chris for your encouragement.

[Inca in reply to JediReject]

Great to see your input Chris...often wonder how you are doing...you know the lot I think and survived with your courage and humour.Really hope you are doing well.....e hugs to you and family who were with you thru the lot.

Sally.....down just now need a booster of something or other!!!!

[JediReject in reply to Inca]

Hi there Sally, , many thanks for your kind words , , I'm sorry to read you're mood is low, but I can assure you that you're not alone in that respect. As much as I try to remain cheerful things do get me down and then I feel guilty as I'm so lucky to still be here, , I guess it proves I'm not a robot or the product of Artificial Intelligence.

I do think also that in your case it's part of living with cancer / MPN.

If only we had a feel good potion straight out of Harry Potter but alas we don't. I will make do with a pint in my local Leaky Cauldron .

Regards - Chris

[Patchworklife in reply to JediReject]

Can I add my thanks Chris to your response to Sally? Your words were timely...

[JediReject in reply to Patchworklife]

Yes its as much a mental battle as a physical one. Throughout my MF journey I have been in some truly dark places and it's been like armagedden in my head sometimes. But fortunately I am able to conjure up coping mechanisms which give me the mental strength to overcome these episodes.

Best Wishes - Chris

[Inca in reply to JediReject]

We don't have a Leaky Cauldron to go to ,but I cheer up a bit with Jameson Irish whisky about apero time!!You are so right ,I think our M P N and in my case the loneliness of it does make a downer .The only time I meet another is when we manage to get to a forum in Uk.Like you I feel guilty as we are lucky to be alive,unlike some really nasty cancers that kill.Great that you keep going Chris,you are an inspiration to us all.E hugs Sally

[Cja1956]

I agree with the others. I’ve been on Jakafi for eight months now. At the beginning I felt like it was causing me more fatigue and headaches So my doctor when used my dosage. But my platelet numbers increased dangerously And my doctor told me I needed to increase my dosage again and now I’m taking 10 mg in the morning and 10 mg at night. My headaches are virtually gone and I’m feeling much more energy. I’m going back to him today to see how my numbers look. So I would definitely give it a chance to work.

[Inca]

My platelets are normal for the first time since starting Rux....but my H CT and HG are going up ...I am tested every two weeks ,at first hospital gave me 20 mgs and everything went wrong,then 10 mg at night now consultant wants me on 5 mg morning then 5 mg night......beginning to think they do not know what to do with me ???? Certainly I am not anaemic which seems to be the pattern for others.Do have more energy,but it soon runs out,then I am really out on my feet....maybe just too old to try to live my once busy normal life....interesting to read all your posts,think I am the only MPNer in the Aquitaine!!Keep well all best wishes,Sally

[Patchworklife in reply to Inca]

Sally, you're a kind star for writing your response. I guess we are all on a Jakavi mystery tour and it is good to be able to share the bumps and bruises we encounter along the way. I am very grateful for the company of everyone on this strange journey.

[Hidden in reply to Patchworklife]

Bumps and bruises describes it well! It is a strange drug that helps some of the symptoms so quickly while making others worse. However one thing I forgot in my previous reply was that including being warned about anaemia I was told that I was bound to put on weight. I didn't really pay much attention to this as I'd lost 7kgs over the previous 2 years - not intentionally - so putting it on wasn't really going to be an issue and in the great scheme of things not a priority.

At the stage you are at now I was also at my most breathless and I did notice almost in passing that there was no weight gain. Felt quite harrumphy (is this a word?) about everything. However at between 3-4 months quite a lot of the weight went back on which in the circumstances was a good thing and I realised my appetite had gradually returned. Also the breathlessness though still an issue wasn't so debilitating - so what I'm getting at in a roundabout way is that I think a "switch" was flicked in my marrow/blood and the drug starting fully working about when it is usually predicted anaemia would get better.

[Patchworklife in reply to Hidden]

Thank you DJK, your comments echo my consultant’s prediction that anaemia should improve in another couple of months but I have been feeling so pathetic that I began to doubt him. Thanks for encouraging me.

[Cja1956 in reply to Hidden]

I was told I had anemia with low red blood cells, high platelets, and extreme fatigue, headaches, and dizziness about 2 months ago. My hemo increased my jakafi and I am feeling much better. I went to see him last week and even though I am still anemic, my platelets went from 847,000 to 522,000 in a month. My appetite has come back and am also gaining weight which I needed. I resisted increasing jakafi (from 10 mg to 20 mg per day) for months but my doctor finally said I had no choice and he was right. I still take 2 hydroxy and 1 baby aspirin, as well.

I hope you continue to do well.

[Inca]

I think we have to be patient....not easy ...and give it time to work,to be honest after 9 yrs on Hydrea ,I was shocked to learn it was not working for me,,was really poorly as I had got used to it and had little trouble after the first few weeks,actually I know U K insists that over 45 is dangerous,here in France they don't seem to be so worried.When I was diagnosed my H C T was over 80!!! Did not even know I was in bad state!!! In hospital they could not get the blood out,then I knew I was in trouble!!!!Strange disease.

Hope you soon adjust,looks like it takes a few months,Good luck to you,keep posting your progress!! E hugs Sally

[Patchworklife in reply to Inca]

Thank you so much. I hope your continuing recovery goes well.

[Leighcox85]

I have been on jafiki for nearly 2 years i have had mf for 10 years but it’s got a lot worse now I can barely walk my stomach looks like I could birth at any minute Iam in constant pain my disease has progressed and all Jakifi has done for me is reduce spleen slightly I also have severe skin lesions all over my body from the drug Iam on 20s but I require transfusions Iam 34 years old and it hasn’t helped with any of my symptoms at all if anything they got worse I hope you have a better outcome surely there must be something out there that helps