Coming off Ruxolitinib, taking Flucloxacillin and feeling rubbish

[Otterfield]

I have felt incredibly well on Ruxolitinib since starting it in 2020, apart from brushes with Shingles and Campylobacter. I've now had a two week tapering off and took my last tablets on Saturday. I have been put on Flucloxacillin for what may or may not be an infection under my toenail (my GP decided this from a photo on an e-consultation, but the team at Southampton agreed that it's best to be on the safe side as I approach my intensive chemotherapy).

The problem is that I feel really weak and ill. The antibiotics make me feel nauseous and my appetite has plummeted. I am also finding it really hard to sleep and am so fatigued. My walking has gone down from 3.5 miles a day to 1 mile, holding on to my husband with aching legs.

I had a blood test today and am waiting for the results before I phone my transplant nurse. I expected my haemoglobin to have gone up as Ruxolitinib was reduced but I feel as if it could be very low.

I hoped to be going into the SCT feeling positive and well, though inevitably scared, but now I'm just feeling negative.

Sorry for having a moan but I know you are all so supportive.

Thank you, Jennie

[Cja1956]

You’re certainly entitled to moan. You have a lot resting on your upcoming SCT and you want to be at your best. I’m really sorry you’re not feeling well and hoping they can get your numbers up before your procedure. There are going to be setbacks and this is one of them, but you will get through this. Sending hugs across the pond.

All the best,

Cindy

[hunter5582]

Sorry to hear you are feeling rubbish. Hope you feel better soon. Here is something that always gives me a smile.

youtube.com/watch?v=d-diB65...(Not working as expected?)

[ConniesDad]

Hi Jennie. You can moan and grumble as much as you want here, we’re all here willing you on. Keep your head up and your eyes on the ‘prize’. 1 mile is better than none and at least you are keeping active. Keeping you in my thoughts. Garry

[champ30]

Stick with it Jennie,I know how you feel with the weakness,I too am so weak these days and sadly not walking hardly at all.I have been on 3 doses of introvenous antibiotics including November dose each 14 days at a time for bad flare ups of bronchiectasis.Part of each spent in hospital and the remainder administering myself at home.I have been off any haematology drugs for at least 3 months as any chemo drugs contribute to inflammation.I'm due to restart hydroxarbamide soon instead of lenalidamide which I was previously on.My haematology doctor says it's the lowest med to affect the immune system and need to lower platelets.Keep up your spirits Jennie and go for it although you must be apprehensive.Thinking of you.Lynn.

[DJK12]

Easy to say but hang in there. Presumably the ruxolitinib is still working itself out of your system and you're also now being battered by the antibiotics - very difficult and unpleasant just when you want to feel at your best. Hope your blood test showed higher hb levels and you feel stronger soon. Best wishes Diana

[Otterfield]

Thank you everyone. I don't know how we would get through these things without one another. And Hunter, your video made me giggle, so thank you for that!I have just had my blood results and my haemoglobin has dropped to 72, which at least explains how fatigued I feel. Platelets have fallen to 6, which is scary. I'm having transfusions of both on Thursday.

I will be so relieved when I come to the end of the antibiotics.

[DJK12 in reply to Otterfield]

No wonder you feel so fatigued. I don't know how you managed a mile - when I've been at that level the end of the road was a challenge - you have the right attitude and determination though for the SCT. Hope you've got the good weather we have and you can sit outside and rest up until the transfusions.

[Bluetop in reply to Otterfield]

Sorry to hear a toe infection is having such an impact -something you could well do without. I hope the transfusions help.

[ktaylor5563]

Hi Jennie I have been following your posts about your journey to transplant. I too have MF diagnosed Aug 2020 after having ET and PV on Ruxolitinib and Hydroxycarbamide. I'm currently going through extensive tests on heart, lungs ,kidneys etc, have a 100% brother donor and age 59. I'm terrified at the prospect of transplantation but at the moment life expectancy is only a matter of 2/3 of years. Your posts give me hope as we are similar with this disease, so chin up and take care. x

[JediReject in reply to ktaylor5563]

Hi ktaylor just wanted to say that whilst there's no disguising the fact that opting for SCT isn't an easy choice to make for most folk it has been successful for many thousands enabling them to go on and live long lives. With your brother as a 10/10 donor match there's no reason why if all your tests are good you shouldn't join the ranks of BMT survivors.

Of course SCT / BMT isn't a suitable option for some and nobody can guarantee a successful outcome but if you're reasonably fit and otherwise healthy it is doable and as the other Chris on here (with the Princess Leia Stem Cells) oft quotes 'the prize is life' .

Good Luck to you going forward.

Chris

[ktaylor5563 in reply to JediReject]

Thanks Chris, I have also followed your journey which has been tough but your still alive. Seen consultant today the test results so far are looking ok just done the 24hr urine and still another couple to do, no confirmation on sct date yet but looking at May/June, it was lovely you posted back with positivity I’ll keep you updated. Karen

[JediReject in reply to ktaylor5563]

OK that's good then Karen, , you reminded me of the 24 hr urine , gee I could hardly lift mine 😃. I will look forward to your update. Please feel free to get in touch should you have anything you think I may be able to help you with. Chris

[Meatloaf9]

So sorry you are not feeling well. You are obviously facing a difficult road ahead for what will probably feel like an eternity. But it won't be an eternity and when you come out the other side of this black hole I am hoping you are a brand new you with a long life ahead. Keep the faith and keep your transplant team informed of everything that is going on with you and follow their instructions. Everyone on this site is a small part of your team and will be with you and following your journey and praying for your speedy recovery and return to those 3.5 miles. Watch that video again and best to you always.

[Inca]

You are an amazing courageous person Jennie,I hope you soon soon feel better.All my Best Wishes to you.Sally

[Poppy6060]

Hi I hope your infected toe heals up soon and you can start to feel a little better keep faith best wishes Poppy x

[JediReject]

Hi Jennie sorry to read of this going on just now, any chance of a change of antibiotic, think I had this and didn't agree with me. The last thing you need is a loss of appetite! ! It's working against you rather than for you which isn't helpful in your position so I would contact GP if you haven't already.

Just to try and reassure you I had a few ups and downs prior to SCT and whilst the ups were pushing me forward even minor downs were elevated in my mind in a negative way over whether I was making the right decision. I think it was because they accentuated that element of lurking doubt in what is a huge life / death decision.

Anyway that's my take on it and I hope youre soon fighting fit and get your mojo back because from what ive read the way you've dealt with it all so far is admirable.

Regards - Chris