Vaccinations

[lizzziep]

I spoke to my GP yesterday, I was having a steroid injection in my knee. He had obviously been looking at my records, as he asked how I was getting on with Momelotinib. He asked if I’d had the autumn flu and covid vaccinations. I informed him I wanted to have my blood test before having a jab so I would know it hadn’t interfered with the results, and also that I wanted at least 2 weeks between the vaccinations. He agreed completely, said it was a lot better if they were spaced out. So I asked him why they were given together, apparently it’s a time constraint, but if anyone wants them separately they only have to ask! There are no signs in the surgery informing patients of that option, probably because quite a lot would ask for it.

[ainslie]

smart strategy on your part 👍

[hunter5582]

I agree 100% on spacing out the vaccinations. The last time I did two together, flu + pneumonia, it made feel quite ill and both arms hurt. I have never reacted to any single vaccine this way. I get that it is more convenient to get both vaccines at once, but it is not worth the increased risk of adverse effects. Glad to hear that your GP respects your right to determine how best to manage getting your vaccines.

[brightlys]

I always try to space out mine. I feel like my arms hurt much more when I get vaccinations together.

[EPguy]

I've posted in detail on the spacing. Best is 2 weeks+, next best is same time, worst is 1 week apart. See my post Last Dose for where that led for me.

Extra aches and pains are no fun but not the biggest risk to worry about. As I put it, the immune system is at max panic (intentionally) at the one week point, adding another stimulant right then raises risks of autoimmune and serious neuropathies. At 2 weeks the 1st vax has settled down.

None of this was a discussion when it was just a yearly flu vax. There is no official advice on any of this, that is a scandal in my opinion.

I believe these issues are particularly important for those on IFN.

[RoundTheWorld]

Pleased to report that my NHS invite offered patient choice:

“You only need to book 1 appointment for both the flu and COVID vaccinations. On the day, you can choose to get both or just one.”

I’m assuming that turning one down doesn’t mean you can’t have the other one later - will find out when I go.

(Update: The nurse was surprised I asked if I could have the flu jab later but was ok for me to do so when I explained why).

[lynda1ann]

Hello, hope you don’t mind me asking, but how are you getting on with Momelotinib,? I’ve been on Rux for 5 yrs and consultant thinks I should change to Momelotinib, I’m so confused

Lynda x

[lizzziep in reply to lynda1ann]

I’d been on Rux for about ten months but my haemoglobin wasn’t improving despite twice weekly EPO injections. I was quite worried about taking it, especially when the oncology pharmacist phoned me and went through all the possible side effects! Anyway I decided to go ahead with it, the first week I felt as though my head was full of cotton wool, and I was a bit nauseous too. They gave me anti sickness and anti diarrhoea tablets but I haven’t needed them.

However so far so good. I’ve been ok, can’t say I’ve felt any different apart from I feel as though my spleen has gone down a bit, I can’t feel it after eating now. I had a check 3 weeks in, which was more to see if I had any side effects than whether it was doing anything for my blood. My haemoglobin had gone up very slightly then. I’m having another review in about 10 days so I’ll know more then. The consultant did say most people who took Rux were ok on Momelotinib. I’ll post the results when I get them. The doctor did say if it didn’t suit me I could go back on Rux.

[friendofpiglet]

I had both 'flu and covid jabs yesterday (right arm and left arm respectively).This morning both my arms ached somewhat - by midday my 'flu arm was fine, my covid arm still a bit achy but not enough for me to not get my last bit of gardening in before we're subjected to continuous rain until February!

I too am on Rux since August, which so far seems to suit me far better than HU (aka "filthy stuff")