Shaky hands and fast heartbeat.

[Soybean]

Hey guys

Firstly....HOORAY IT'S THE WEEKEND!!! I CAN FINALLY REST!!! hehe!

Just a quick question. Over the last couple of weeks I've noticed my hands/arms getting more and more shaky when I try to use them. Also my heart beats like its a bee's wing (like its beating really fast). The shakyness isn't awful, but it's noticable. Both things happen in the morning and then die down, then after lunch they start up again for a while and then die down. I notice it more when I'm working cos I have to type, measure out liquids, pop out pills, concentrate ( ) etc etc...with the shaking it only seems to happen when I use my hands, if they are just hanging by my side then they don't shake. This morning I was trying to measure out 40mls of medicine for a prescription and I had to steady the pouring hand with the other hand cos it was so shaky, took me ages to get the miniscus right!
Has anyone else experienced this whilst on mercaptopurine/infliximab? I wonder if it's cos of the meds or if it's just my body being nervous or something like that?

Anywho thanks for any thoughts, suggestions etc

Soybean xxx

 

[Jessi]

I only ever had that happen to me while on prednisone. Are you currently on it? Remicade/infliximab has never caused it for me, but you never know... could be an allergic reaction or something.

 

[David]

When was the last time you had your Vitamin B12 level checked? And what was it?

 

[Soybean]

@ Jessi - I haven't been on prednisolone since May. I was allergic to azathioprine but I've not felt as sick as I did when on that, or had any of the other symptoms. The drs have not mentioned my lft being bad either so I guess everything is ok

@ David - hmmm, well I have an fbc every 8 weeks with my infliximab infusion. Last one was 4 weeks ago, they rang me the next day and said to halve my mercaptopurine dose for a week (ended up being 2 weeks cos my nurse wasn't available to do the blood test) cos my wbc count was low (when I saw my gastro dr he said it was only by a few points). After 2 weeks it was back in the normal range so I went back to my normal dose. Nobody has ever mentioned my b12 levels so I guess that means they're ok? I have my next infliximab in 4 weeks, but in 2 weeks I'm getting the last of my hep b vaccines (lets hope that this time it takes lol!), maybe I could mention it to the nurse at my surgery and see if she'll arrange for the tests to be done. Ps I've never seen any of my blood test results, the only time I hear anything aboot them is when they're bad lol!

Thanks both xx

 

[DustyKat]

B12 isn't included in a FBC. That's not to say they aren't keeping an eye on it but I would hazard a guess and say they aren't. Next time you have bloods drawn ask them to add it to the request and I would also throw in Folate, Iron Stores and Vit D for good measure.

Dusty.

 

[David]

I agree with Dusty. However, if it was me, I would try to get all of those checked ASAP rather than 1 month from now with your next infusion.

 

[Soybean]

@ Dusty - thanks for that info, I didn't realise it wasn't incl in an fbc, you're like the Oracle hehe! I'm getting my last hep b vaccine in 2 weeks so I'll ask the nurse to arrange those blood tests then.

Soybean xx

 

[carrollco]

Oh my goodness. I had the fast heartbeat and shaky hands. Sometimes my mouth went dry. Thought it was anxiety--turned out to be B-12. I feel soooo much better! Lack of B-12 can be miserable.

 

[Soybean]

Quick update...

I've been feeling worse over the last week, more shaky and keep feeling sick/faint, throwing up little bits and having bad pressure headaches. Yesterday (Monday) felt really awful in work, had to rush to the loo's cos I thought I was gonna either hurl or faint, luckily I did neither, (which is suprising seeing as how disgusting the loo's in work are, I swear they never actually clean them! ) but sat on the floor in the cubicle for a while. When I came out I had lost all colour, looked pale and slightly yellow (Stayed looking like that for a good hour at least).
When I went back down to work my legs/butt decided to shake uncontrollably so I thought right better at least inform my IBD nurse. She said she'd check with my GI in the afternoon and that they would probably do blood tests today (Tuesday) and that my last haemoglobin result was border line. She got back to me today and said that the GI thinks it's probably the Mercaptopurine so I have to stop it for a week and see if anything improves. I have to ring her in a week with the results and we'll go from there.
As I'm having my last Hep B vaccine at my GP surgery on Thursday I think I'll still ask for a full blood check to incl B12 etc just to see if there's anything else contributing to it.
Soybean xx

 

[David]

I'm so sorry you're feeling worse

You may want to add Magnesium to the B12. See here.

Good luck!

 

[Soybean]

Thanks David, I'll ask them to test for that too.
P.S Thank you for the vitamin and mineral deficiency thread! It's very informative, must have taken you a while to research all of that! We are all very lucky to have someone like you looking out for our best interests
Soybean xx

 

[Soybean]

I spoke to my IBD nurse today, I have stopped feeling sick and faint (still get the hand/arm shakes, but no lower body shakes) so she thinks it's definitely the Mercaptopurine so I'm not to take that anymore and am just to have I.V Hydrocortisone before each Infliximab.
I rang my GP last week and asked for the Vit B12 and Folates (gonna ask IBD nurse aboot Magnesium) to be checked (they checked on Monday for FBC incl Vit B12, LFT and kidney function - go figure!?!) but after speaking to my IBD nurse I rang the G.P surgery to check my blood results and the receptionist said they were all okay??? So that's got me wondering if it really was the Mercaptopurine, surely if it was then my bloods taken less than a week later would show abnormalities? (I only say this as when I had a baaad reaction to Azathioprine they didn't check my bloods till 5 days after stopping it and my LFT was still way outta whack).
Hmmm I'll deffo check with my IBD nurse when I have my Infliximab a week next Tuesday (they had staffing problems so had to move my appt by a week - doh!) but if anyone has any insight as to why all bloods would be fine then I'm all ears.
Cheers xx

 

[Crohn's 35]

Hi Soybean! Wow you had a rough time! I reacted really fast to Mercaptopurine ..within days, so I stopped taking it cause it was Christmas holidays and my gi called to say get off them. NO problem there. Most likely your body was trying to react to it. I dont like two meds at once because you dont know what is faltering. See how you feel after your next inflixamab infusion. How long have you been on it?

My soybean has to feel better soon .

 

[Soybean]

Aww thanks Pen

I've been on Infliximab since 17/5/2011, my next one will be my 5th infusion.

xx