Lupus Support Group

I have been suffering from what is most likely drug induced lupus (caused by humira for my crohns disease) since late September/Early October last year. My GP sent a referral to my nearest public hospital in November last year, and then another in January this when the hospital said that they hadn't received the referral. So I have been waiting, saw my gastroenterologist in January who contacted the rheumy and they decided to put me on steroids - these helped immensely. I am now down to 5mg of pred, the pain is coming back. I contacted the hospital where I my referral was sent, and was told that, even for category 1 patients (being the most urgent) the wait time is 18 months to 2 years!! I couldn't believe it! How is that possible! I can't wait that long to see a specialist. So I have been back to my GP and told him to send more referrals to both public and private doctors in my nearest capital city (about a 2 hour plane flight away). I am willing to do anything, regardless of the cost etc to get to see a doctor. Has anyone else had these sorts of wait times? What have you done to get through? I am even considering getting myself admitted to my local hospital and seeing if they can transfer me to the original hospital (about an hours drive away) where my referral was sent.

I have never heard of such ridiculousness! I'm in TX and never had to wait more than a few weeks for a non urgent eval from a rheumatologist and more than a few days for symptomatic apt. Are there any private rheumatologist in your area that you can get in with? Speak to their nurse and they can usually work you in. Then you can get the referral sent to them???

So sorry for your challenges, best of luck and keep us posted!

I have never heard of waiting that long......maybe a few months but not two years. I hope that your general doctor can send you somewhere else to get in, if the only place you can get into is a 2 hour plane ride then that is what I would do. YOu need to see someone. I drive 2 hours one way to see my Rheumy, so for me, it's worth it. I wish you all the best.

Eva

I hope your GP can find another specialist. I have never heard of that long of a wait. I went to the Cleveland Clinic and had my first appts in just a few weeks and they are one of the best in the country. However, my follow up appts with the same docs were booked 6 months out. That is really odd that you have waited so long. I think sometimes to get treated it is easier to just travel. Fingers crossed you get an appt soon.

Hi are you not in the US? That is a very long wait and hopefully they can move it up.

Alison

Hello. My understanding of Drug Induced Lupus was that once the medicine was stopped, the symptoms would disappear on their own? I looked it up to be sure before I posted. Here is what the Lupus website says:

Drug-induced lupus erythematosus (DILE or DIL) is a side-effect of long-term use of certain medications. Specific criteria for diagnosing drug-induced lupus have not been formally established. However, some symptoms overlap with those of SLE. These include:

Muscle and joint pain and swelling

Flu-like symptoms of fatigue and fever

Serositis (inflammation around the lungs or heart that causes pain or discomfort)

Certain laboratory test abnormalities.

Once the suspected medication is stopped, symptoms should decline within days. Usually symptoms disappear within one or two weeks. Drug-induced lupus can be diagnosed with certainty only by resolution of symptoms and their failure to recur after stopping the medication.

So, I guess I'm wondering why, if it is drug-induced Lupus that the symptoms are not decreasing on their own? I wish you all the best, and hope you get an appointment soon. Please keep us posted.

Hi Pjmel my 21yr old daughter has Chrons and was on Remicade for 8mos and ended up getting Lupus from the Remicade. She has had more trouble from the Lupus than the Chrons. I also thought once you stoped the meds the Lupus would go away but thats not the case if you have an autoimmune disease to begain with such as Chrons. Talk to your GI Dr about Endocort it is a new form of steriods out and you can be on it for a longer period of time. It has brought her much relief. yet the cost is very expensive but well worth it. Just remember most likely you are sun sensitive so use protection. Ask your GI for samples of the endocort alto we get hers form Canadia cost in the US is $2,400 for 30 day supply but this Med works both for the Chrons and the Lupus. Best of Luck I truly know what your going threw.

Thank you everyone for your messages. I live in North Queensland, Australia and there is only one rheumy that I can see at the nearest hospital that has these types of specialists. I guess there is a HUGE demand for their services. I have started looking on the internet for other rheumy's in other parts of Queensland, and am going to start making some calls very soon. I actually got to see a rhuemy in Brisbane (our capital city) but it wasn't for diagnosis only for a fitness for duty assessment through my employer. But I got to ask him some general questions which was helpful.

I have read on-line somewhere that it can take up to six months for the humira to get out of your system, at which time the lupus MAY be reversed - it has been about 5 months since my last injection so I am hoping and have everything crossed that I just need a bit more time before it is all gone from my body and I will get better (wishful thinking but I am trying to remain positive).

Thank you again for all of your support, and I will keep you all up to date with my progress.

Hello. My rheumatologist is a member of the international association of rheumatologists or some such thing. I could ask him for names and contact info for Lupus specialists in North Queensland, if that is helpful to you.

Thank you Hawakeita. That would be really fantastic. Thank you so much for your support. Having a bit of a down day, have sick kids and have had to come home from work to look after them and getting a bit of grief from my employer about it. Kind of like, don't you have enough time off?!! I am only on half days at the moment and so any extra time off is kind of frowned upon. Really don't need any more stress at the moment.