Which medication next?

[saranne]

I am wondering what other peoples experience has been as you progress through medications.

Since SLE diagnosis 8 years ago have been taking 5mg prednisolone Plaquenil and cocodamol 4 x a day, for the joint stiffness and pain. I also have fibromyalgia and ostero arthritis causing pain. Sjogrens -dry eyes- and ulcerative colitis under control.

I bruise easily and get blood blisters on the roof of my mouth, which I wonder is thinned skin? Red cells large and B12 is low according to some but just in official 'normal' range. I am now in a lot of constant pain, stiff joints and muscles, so the question to the registrar next Tuesday, who is always different and never a lupus expert, is if current meds not as effective as before, what medication could I try next? I am concerned about long term steroids, I don't have major organ involvement and it seems unusual to be permanently taking them, the high dose of codeine, which I am now addicted to (GP's words) works to 'lift' me out of the pain, but is it really OK long term? Does anyone have more informed opinions from better informed doctors? Is an immunosupressent normally used if Plaquenil is not enough ? Are they 'safer' than steroids? Does increasing the Plaquenil help? Does anything actually take the pain away? This month could be described as a flare as it is worse, but I am never actually pain free.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

It seems to me that you should ask to speak to your consultant, which you are entitled to do. You might have to see the registrar, but s/he could then call the consultant. Which hospital are you at and who is the consultant?

The questions you are asking need to be addressed to your consultant. Not all rheumatologists are expert in lupus and the registrar is not a specialist.

There is a wide range of pain relief but it sounds as if you are worried by your GP's remark of "addicted". There is a great deal of difference between a drug addict who needs the high and someone who needs pain relief and the body is asking to be freed from pain. If you were not to have any pain, you would be able to come off the pain relief. As it is, you are not on opiates or morphine so you are only getting moderate pain relief.

The rule of thumb is to take corticosteroids up to 7.5 mgs a day because this is what our bodies naturally make. Unfortunately, the body is lazy: why make corticosteroids when there is a pill! This means the body does not make what it should. Long term corticosteroids, particularly high doses, are not good for the body. You may need a "maintenance" or low dose with immunosuppressants or steroid-sparing drugs. However, they also have side effects.

What do you take for ulcerative colitis? Inflammatory bowel disease, which includes UC can also be related to SLE - some patients have more than one autoimmune disease.

Plaquenil is the standard drug used to treat lupus but it does not help everyone or every aspect of lupus. I am not suggesting you stop the Plaquenil! Rather, there exists a wide variety of medication but you need to speak with a lupus specialist. Unfortunately, not all rheumatologists are expert in lupus.

I therefore urge you to speak with your consultant - don't be fobbed off - as this is a reasonable request since each time you only see a junior doctor and you need a consultation.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[Hidden in reply to lupus-support1]

Hi

I just tried to sign up to the lupus message board but it keeps saying that I have not entered my date of birth in the correct format. I've tried everything I can think of! Please can you advise.

[lupus-support1 Administrator in reply to Hidden]

I did give you the instructions in my first message. Towards the end I wrote,

"When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/"."

If you have any problems, please email me at: roz [at] [lupus-support] [dot] [org] [dot] [uk] and send your details and I will register and validate your membership.

With good wishes,

Ros