[Nutty]

Hi everyone,

I have been taking prednisone for a little over 2 years and methotrexate (25 mg) for at least a year. The metho seemed to work great at first, but is no longer doing the job as I'm trying to wean off the prednisone. I haven't had pericarditis for over a year, but now it's back. I just reduced my prednisone 2 weeks ago, to 8 mg from 9 mgso I suspect this has something to do with it. I am super sensivite to prednisone, so I can only reduce it 1 mg a month.

I was recently diagnosed with diabetes from the prednisone; however, my doctor didn't want to change my meds then until my blood sugars were under control. They are now, so I suspect it's time for a drug change. Imuran was suggested at one point, but I'm really worried about the possible cancer side effects. The doc said there were a lot of drugs available to try out.

Is there anyone else who suffers with serositis that is on different medications? I can't take any anti-inflammorities though as I am on coumedin for a blood clotting disorder.

Thanks.

Nutty

 

[Lily]

Hi Nutty,

I can vouch for the effectiveness of Imuran in my case. I havent had any Pericarditis for years and I only have little hints of Pleuritis every now and then. That's a far cry from constant Pleuritis I was getting and the odd bout of Pericarditis.

There are risks for every med out there, we really have to weigh them up against our quality of life. For me it is worth it. Remember that those studies done are for cancer patients who are on much larger doses of Imuran than we are, something to bear in mind.

Are you also on Plaquenil, I think that helped my Serositis a little too. Certainly the combo of that, Imuran and a NSAID has done the trick.

I hope you find something that works for you and that you are comfortable taking.

love
Lily

 

[Nutty]

Thanks Lily,

I'm glad the imuran is working for you. My sister has also taken it for a few years now for crohn's disease. The was on prednisone before that for 35 years!

I wasn't aware that the warnings for imuran were coming from studies on cancer patients. So, something to think about.

Thanks again.

Nutty

 

[Clare.T]

Hello nutty
I understand your fears - everytime I have taken a new drug I have a moment's panic wondering what on earth I might be doing to myself. But knowing how many people take these drugs for lupus for years without any harmful side effects has to be encouraging whatever the statistics might be. If you don't try it you will never know how much it can help you so you can't assess the risk/ benefit.
Luckily my doctors have always discussed what the risks and side effects might be and also why they recommended trying the drug. You will be regularly tested for signs of changes in blood counts and liver function.

I have found it very helpful added to my other meds, only low doses 75 or 50 mgs. By the way I have always refused Prednisone because I knew that I would rather suffer my lupus than risk the side effects of that drug which might not have any risk of cancer but has an appalling list of other serious side effects. If my lupus had started affecting my organs I am sure I would have had a different take on it.

Lots of luck

Clare

 

[Lily]

Hi Nutty,

You will have to forgive my muddled brain lately (I haven't been well). Imuran is of course used as an anti-rejection drug after organ transplant not for cancer treatment as I previously stated.

Most of the articles I have read have said that often there are two or more drugs involved in anti-rejection therapy, not just Imuran alone. That in itself can pose an increased risk of cancer, not so much the Imuran just on it's own. Initially the dosages of Imuran are higher to begin with for anti-rejection therapy but after a while they are often lowered and are closer to what we take.

Of course the usual precautions apply, being diligent with sun protection (something most of us do anyway), and having blood count and liver panels run every month. If the white cell count drops too much then they will often take people off it because it is then you are at increased risk of infections and also the potential for cancer cells to go unchallenged.

In my couple of years on my maximum dose (150mg) of Imuran not once has my white cell count dropped. In fact in my case it increased my white cell count back to normal after it had been previously low due to Lupus.

love
Lily

 

[Nutty]

Thanks for th info Clare and Lily.

I really have to get off the Prednisone because it is killing me. I already developed diabetes and am being watched for pressure behind my eyes.

With this last bout of pericarditis, the emergency room doctor talked to an internal medicine doctor from the city, who said to increase my Prednisone. I had just gotten it down to 8 mg. Because of my sensitivty to this drug, I can only reduce it 1 mg a month. They wanted me to go back up to 15 and I just couldn't, so I only went to 10mg. I really hope my rheumy calls me today. I can't stand the pain and I don't want to take more prednisone!

Thanks again.

Nutty

 

[Nutty]

My doctor called and I have no choice but to increase the prednisone. I'm not too happy about that. He will most likely start me on imuran, but he says it takes a while (few months) to get into my system. So, I'm back up to 20 mg prednisone for now and may have to go as hight as 5-60mg. He may do the metho injections next, then imuran.

I mentioned my concerns and he said that lymphmatic cancer is a side effect of Lupus itself. He mentioned as well that they studies were done on kidney transplant patients who were taking other medications. He said the risks are low for Lupus patients. So, I guess I'll see when I cross that path. I don't think there is anything really safe for Lupus patients to take.

Nutty