Saw another specialist out of my team of Rheumatologists today and after all that soul searching he has agreed Rituximab is no longer recommended for me right now. He listened to all my fears and worries and totally understood. Like you all said to me, he said it is my body and I have a say in what I put into me.

He said because of the severe infection I had in hospital and the sinus infections and salivary gland infections I keep getting (sjogrens causing them), that any TNF or B Cell drug will make these worse and cause major problems.

He said we need to take you back to basics because of the fact I am allergic to so many medications and even ones I was not before.

He goes now lets diagnosis exactly what you have Psoriatic Arthritis, Rheumatoid Arthritis, Sjorgrens Syndrome, and now Osteoarthritis I am so greedy lol.

I am seriously anaemic and my iron levels are in their boots, which explains the severe fatigue (even more than usual), shortness of breath, and loss of hair. So I am on a hefty dose of iron supplements. Best get the prune juice ready haha,

He looked at my xrays that I had done a month ago and I have got osteoarthritis in my knees, feet, back and hands. The bottom of my spine is crushing together which is why I keep getting back spasms and my left leg keeps going numb from the hip to my knee. I am going to have steriod injections straight into my knees to help with the pain and inflammation. He wants me to go for hydrotherapy and physiotherapy . Where I have the OA in my thumbs it is causing tendonitis, which explains the burning pain and dropping things, so he wants a different splint on my hands.

He got the ultra sound thingy out and ultrasounded my thumb joint and knees and showed me exactly what was there, I have never had any of this done before. He did say unfortunately we cannot repair the damage that has been done but we can try and relieve some of the pain. I have alot of muscle wastage in my legs which he said also causes alot of pain.

He is starting me on plaquenil 2 x 200mg which he is hoping will help a little with the Sjogrens Syndrome and yes I am worried about taking a new drug but I do know it will be out my system relatively quickly if I get a reaction. If it flares up my psoriasis I will have to stop it straight away.

I have got to stay on the methotrexate because that is helping to keep some of the inflammation levels down.

I was dreading this appointment and even though he told me he cannot repair the damage and that means I really may not be totally out the wheelchair and can hope only to get a little more mobile I am relieved.

He was amazing, need less to say I will be most definently staying with him. Told him for his sins he now has me for life haha...

Love
Belinda
xx

Thank you Beth.

How are you doing hun ?


xx

Hello

So pleased that you have had a good appointment today. It does sound like you really
were listened to and definately going to try and get sorted.

I wish you good luck. Let us know how you do.

Rose

hi Belinda,

that sounded like a really good consultation and although not great news with Osteo etc. at least you know what's what and what's causing the pain,

i'm glad you are happy with the new drug regime .. if you trust this Consultant then they are worth their weight in gold.

hope things improve for you soon,

Suzanne x

I really hope the new treatments work. You really have got a balancing act to manage what with having multiple conditions and being so prone to allergic reactions to so many drugs. Keep us posted Belinda. I am struggling hard too and feel less alone reading what you are going through. I'm so pleased that you have found a health professional that you trust and have faith in. That helps a lot. Love Naomi X

Thank you Rose.


I hope your feeling a little better today and the fact you have been in alot of pain the benefits start showing for you real soon .

Love
Belinda
xx

Hi Lorna...

Thank you, for your advice. It is good to know someone else who is on the plaquenil.

Takecare

Love
Belinda
xx

Hi Belinda,

Just echoing the others really to say I'm so glad you have a plan and someone who's taking everything seriously. It really makes a difference doesn't it?

Vicky xx

Hello Vicky..

Yes it really does make a difference, it is a shame that not all Consultants are the same.

Thank you.

Love
Belinda
xx

So glad you had such a positive appointment, Belinda - hope things take an upward turn for you now.

Take care,

Kathleen x