Methotrexate and circulation issues - Vasculitis UK

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Methotrexate and circulation issues

Mish-da profile image
8 Replies

Hi guys

Just wondering whether any of you have had any issues with circulation namely around fingers,feet & toes since commencing methotrexate and whether this is a side effect or progression of the vasculitis. Over past few weeks my fingers go blue (random) sometimes my toes too but don’t notice this so much as my feet are generally covered at the moment! Being relatively young and fit before diagnosed with GPA only in December it seems more issues are coming up 😞

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Mish-da
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8 Replies
Mish-da profile image
Mish-da

My other hand is normal!

Unlikely to be Methotrexate and much more likely to be Vasculitis/ secondary Raynaud which can be quite common.

Essentially Vasculitis means inflammation of the lining of the blood vessels. Sometimes people with GPA can get digital ischaemia ( a critical lack of blood supply to the fingers or toes ). Do you have any black lines on your nails ( splinter haemorrhages ) or loss of sensation in your fingertips etc?

I would get in touch with your Vasculitis Consultant. Your diagnosis is relatively recent, most patients are followed up much more closely than you with frequent appts until drug induced remission is achieved.

Mish-da profile image
Mish-da in reply to

Thanks for your reply. I haven’t seen my consultant since I was diagnosed in December, odd telephone consultations with the Rheumy nurse.. not helpful really though. I am seeing him for the second time on Monday.

I have numbness in my finger tips and and numbness and tingling session in my calfs but it’s not constant. I have noticed my feet are often blue/ purplish colour too despite not feeling cold . Never had any issues before so I’m guessing it’s the vasculitis then-as apposed to the MTX- which I’m struggling with on its own 😞

in reply to Mish-da

The British Society for Rheumatology guidelines for GPA are currently being updated I think, these are the EULAR guidelines, statement 4 covers non organ threatening ANCA associated Vasculitis ( AAV ).

ard.bmj.com/content/75/9/1583

It’s concerning that you haven’t been seen for over 5 months. I would absolutely mention the numbness and tingling in your fingertips and calves as GPA can cause nerve damage ( nerves need a good blood supply ) called mono neuritis multiplex. Once the nerves are damaged they can take a considerable time to regenerate so much better to prevent the damage in the first place.

It’s not obvious to me that you have faith in your Consultants ability to manage your disease.

cairneyh1 profile image
cairneyh1

Hi Misha.

I was diagnosed with EGPA 2 years ago. I developed renauds ( whitefinger) a few years before diagnosis- but only when it is cold. The illness damaged nerves in my right hand and right foot which has caused pins and needles an numbness which has improved slowly. Movement of fingers and thumb in right hand was severely restricted so important that you get this checked by a consultant.

Not saying that this will happen to you but important that specialists keep on top of your illness.

Harry

1943bonnie profile image
1943bonnie

I have the same thing, and wondered if it was another issue with vasculitis. my daughter has been after me to go to the Dr.. half the time i am not sure what i should be concerned about. when this is a random thing and my Doctor only goes by Blood work and wants me to go to my GP for everything first. Which cost me twice the money.

Confused,

Bonnie

AmyS1 profile image
AmyS1

Are you definitely seeing a consultant who has specialist experience in vasculitis?? Talk to the vasculitis helpline.

Wagener profile image
Wagener

I too have the same problem in my feet and fingers,I struggled with methotrexate,and am currently on rutiximab..my left side is major weaker than the right also..

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