Face to Face

[Willow1414]

Dear all

I had my long awaited face to face last Thursday .

I Also had my first covid jab on the same day .

I have mentioned my extreme flaring recently .

Well I have now Rheumatoid Arthritis to add to SLE/Sjowgrens +++++

My question is I’ve now been prescribed Mycophenolic , and my consultant strongly recommended to come into hospital this week for a steroid injection .

Consultant told me to start mycophenolic (Ceptive ) the next day Friday .. I was with my consultant well over an hour and a half and also saw the neurologist .,

I’m so scared to start this drug , has methotrexate sent my liver sky high , so they changed to Azerthioprine which has damaged my pancreas and left me with constant inflamed stomach problems .

My consultant was very concerned for me .

I’ve not taken in all the conversation we had .,

I’m worried that I haven’t had my second jab , and my body not agreeing with mycophenolic ..

causes more pain and flare ..

I’m worried that this treatment will irradiate my protection vaccine from covid .,

My question really is ....

is any body here starting new medication and having the covid vaccine at the same time ..

really worried and not well ..

I cannot cope with any more side effects .,

I will be phoning rheumatology tomorrow .

Help ..😢... Not well and not coping ..

🦋❤️

[RosieA]

Dear Willow, I am extemely sorry that you are going through all this. My best advice would be to, as you are, to recontact your consultant through their secretary with a list of all your very valid concerns. Your consultant sounds as though they really do have your best interests in mind and I am sure would contact you to discuss and hopefully allay your concerns. Re not taking in all the consultant has to say. Is there someone at home who can listen in to the converstation with you. It might help. It might also be an idea to contact the helpline here or at NRAS (National rhumeatology society). I have on several occasions when it has all seemed too much and they have been great. Hugs and best wishes. xx

[Willow1414]

Thank you RosieA

This is much needed advice .

I wasn’t aware of been able to contact NRAS

🦋❤️

[RosieA in reply to Willow1414]

Oh yes and they are a wonderful bunch. There are also some ladies on the forum who have also been diagnosed with SLE and RA. They have a wealth of knowledge. I was initially part of that forum but as my symptoms changed I found that the lupus forum were better able to support, e.g my photosensitivity.

The helpline is excellent too and gave me much needed support. I do so hope that you have been successful in contacting your Rhuemy department today. xxx

[Willow1414 in reply to RosieA]

Dear RosieA

Contacted NRAS via phone , I e just had a response phone call back .

The lady was very helpful indeed , great explanation about Biologics and Dmards .

I’m just about to leave a message on the rheumatologist helpline for a return call. Has looks like it’s best to hold back on Mycophenolic for a couple of weeks , until I get some immunity from my first jab of covid vaccine .

I understand now why why much needed Biologics cannot be started yet , has they will effect the covid vaccine antibodies .

The conversation I had with NRAS jogged a few things already discussed at my appointment with rheumatology last Thursday . 🤦‍♀️So again thank you so very much .

Your a 🌟

🦋❤️

[RosieA in reply to Willow1414]

Glad I could help a little. All the very best xx

[Ironmytherapy]

Hello @willow1414 I’m really sorry you’re going through all of this, as if a flare up is not bad enough but to have all these other concerns. I really hope you get the right medicines that agree with you and I do so very wish you a speedy recovery 🙏🏼

[Willow1414 in reply to Ironmytherapy]

Thank Ironmytherapy for message

🦋❤️

[panther50]

As Rosie says NRAS also have their own forum on here. They are lovely & there’s a lot of overlap with lupus. Add them to your hub & you can ask them questions here too. I was diagnosed with RA before I found it was actually SLE. They were very supportive. x