Four months into Hydroychoriqune, not feeling much better

[Gymbabe]

Does this mean it's not Lupus?

Had loads of tests my positive P-an a is now negative, but I was on Azathroprine for two years.

My previous hospital said connective tissue disease, but new hospital seem reluctant to even confirm or deny this.

Not getting much relief from the Hydroychoriqune and still have good and bad days. But a 'good' day does not mean I can do what a 'normal' person can.

Been ill for over 4 years now, I have gone from we think it's MS, to connective tissue to we are not sure. 

My fatigue is terrible, the brain fog and I can't walk up a flight of steps without getting out of breath, I'm 45 but feel 90! I have had a lung function test and I have scarring on my lungs and decreased capitcy.

I am waiting to go back to see the Rheumptologist but I don't have my appt date yet.

Any id as on where I should go next?

[lupus-support1 Administrator]

I am sorry to read about your situation.

Blood tests can and do change frequently. Blood tests need to be repeated,certainly every 3 months. Even so, blood tests can be "normal" or "unremarkable". This is called "sero-negative" lupus and some patients with lupus have "normal" bloods.

Hydroxychloroquine (Plaquenil) is a standard drug. As you have been on it for 4 months, it ought to have made a difference but sometimes hydroxychloroquine may not be enough - it depends on your symptoms. It does not necessarily mean it is not doing anything! It can help with fatigue and skin rashes.

I am not certain whether you are still taking AZA. If this is not the case, when and how did you come off AZA. How long have you been off AZA and this may be why you are feeling so unwell.

I need to stress that your rheumatologist is the most important person for you. Not all rheumatologists are expert in SLE. Some have never seen or treated a patient with lupus. In fact, the teaching about lupus is negligible so unless the doctor has specifically taken a rotation at a lupus clinic (eg St Thomas' Hospital, London), they may not have any experience.

I do not know where you live. If you have not even been given an appointment, I suggest you return to your GP and ask your GP to intervene as you need an appointment now and not in 3-6 months time!

My advice is to get a referral to see Dr David D'Cruz, who is the Director at the Lupus Clinic at St Thomas' Hospital, London. Even if you live a long way from London, you can stay over night at The Simon, on the NHS. Clearly, your situation is unacceptable.

I have sent you a message regarding the LuPUS Message Board where there is at least one person who knows about The Simon.

I do not know why you have moved hospitals but they will probably want to diagnose you themselves. What this means is that you are feeling that you are not getting the treatment you need? 

Please contact me either here or at the LuPUS Message Board.

With good wishes,

Ros

[Gymbabe in reply to lupus-support1]

Thank you for your reply, I am no longer taking the Aza. 

My previous hospital put me on Hydroychoriqune but after 6 months when I thought I was abit better, they took me off it as they thought it was interacting with other drugs as I was confused, they then put me on Aza.

I then move to another hospital, a teaching hospital which is a spealist in AI conditions, as I am now taking less of the other drugs, and because I wasn't feeling much better on the Aza- my old hospital did not seem concerned about this, just said it was working as my bloods were good- so I have gone back on the Hydroychoriqune, my confusion levels are the same as when I was on the Aza. I have been off the Aza and back on the Hydroychoriqune since Jan this year.

I moved hospitals as I did not seem to be getting anywhere and they kept cancelling appointments as they had no staff, saw a different person each time. I feel the new hospital has done more and taken more of an interest in me.

Can I ask my GP to refer me to see Dr D'Cruz in London?

Thank s again 

[lupus-support1 Administrator in reply to Gymbabe]

When you refer to your "confusion levels" have you been referred to a specialist in neuro-psychiatric symptoms in lupus?

I would recommend you ask your GP to refer you to Dr David D'Cruz.

If you have private insurance, I would recommend Prof. Graham RV Hughes who was the consultant at St Thomas' Hospital and has taught Dr D'Cruz and most lupus specialists! He is at the London Bridge Hospital, which unfortunately is private. Dr D'Cruz is also at the London Bridge as well. What I am saying is that even if you do not have private insurance, Dr D'Cruz works with the best doctors and therefore please get that referral.

With good wishes,

Ros