DMARDs

[Welsh92]

I’ve been suffering so badly, recent visit to the GP and they wrote to my team. My nurse rang and my appointment has been expedited to the end of October and I was given the heads up that DMARDs will be discussed with options. I don’t open up much but I’m scared, my back pain is awful to the point I want to cry, I’m on pred for 4 weeks now, but I don’t know what to expect? Can anyone help with what DMARDs I may be offered as a first point?

[CecilyParsley]

Hi, well I am so sorry that you are suffering so much. It is so hard to get anyone to listen so thank goodness that your GP was on the ball.

I only know about my experience with DMARDS. As you know I was sent them through the post. I had the Rheumatology Nirse call me for an “educational talk” and it was odd because she asked all the questions. What did I know about them? What side effects did I expect? When did I anticipate they would start working ? She was very irate that I had not had the precursors blood tests to ascertain whether I am suitable to start them. It did not hold any weight for her that I had booked them but ended up in A&E until 3am. I have now had the bloods taken and am waiting for another call.

The drug they want me to start is Azathioprine. You will need to have the bloods to check that you do not have an intolerance then if that is ok there is a shared care agreement put in place between Rheumatology, your GP and yourself. You are responsible for organising regular blood tests at your surgery. One week after commencing, then every two weeks until you have been on them for 3 months. Then every three months ..I think.

A lot of the friends I have made with Lupus are on DMards and it makes a huge difference to their quality of life. You do have to be cautious about infection and protect yourself as much as is possible but from what they say it becomes second nature after a while.

There can be unpleasant side effects such a nausea, vomiting, diarrhea and hair loss for the first two months. Some experience worse symptoms than others.

I know how daunting this is as I have refused to consider going on them for so long but when you are in constant pain you have to give it a try.

I wish you the very best of luck with your appointment. Please let me know how you get on xx

[Ayea]

Hi There Welsh92,

I think Azathoprine is likely to be the drug they will try first. I was put on it quite soon after being disgnosed. I did the regular blood tests in the first 3 months as CecilyParsley describes and settled on 100mg a day. One thing they did do before starting the Aza was a TMPT enzyme level test. If this test comes out low, you are more likely to have issues with the Aza. My level was normal and I have had no problems.

It takes a month or two for the Aza to work, so you will not see quick results. My ulcers have stopped, I do still get a few pustules on my legs, but it's also much better. I still get joint aches and pains and stiffness.

Good luck. Chronic pain is an awful experience, so I really hope you find your way out soon.

[gillianTS]

I was told Azathioprine would not help my back pain, it was prescribed to reduce the activity in my body's immune system but might help my joints. It never helped me with any of my joint pain or back pain only reducing the intensity of oral and genital ulcers.The blood testing is carried out routinely because it has to be done due to UK strict guidelines on prescribing, the drug can lower the number of white blood cells in your blood, which increases the chance of you getting an infection. Keeping away from people with measles and other infections, even a simple sore throat or a cold can become worse. However this does not affect everyone only if your immune system is reduced too low. Keep copies of your blood tests and monitor your own blood counts against the normal ranges will allow you to see for yourself. My consultant was quite happy with borderline results until the infections started, despite questioning them each time.

I took Azathioprine for over 4 years, my bloods reduced my counts to borderline most of the time which I was assured was OK that was until I started getting infections and was taken off it immediately.

It was only after I stopped taking Azathioprine in the months afterwards did I feel like I was less ill in some ways. The ulcers returned much more frequently and lasted longer. Eventually got approval from the hospital board to have Aprimilast / Otzela prescribed.

Again the Aprimilast / Otzela has done nothing for joint/ back pain which I really hoped would improve and read others have had relief.

Pleased your appointment has been brought forward. Read up before you go about DMARDS and Colchicine, the latter is, in many cases, the usual starting drug of choice for Behcets.

[Amy-Tenacious1]

Remember to eat before taking aza. Aza helped me a bit, but not enough and my liver labs started rising so it was a no-go. After this the doc ghosted me again. I called him back about what now? and his answer was ”I dunno”. Luckily I was prepared (I’ve started doing thorough preparations pre visit, because as you noticed they tend to ask more questions than give you answers). So I said “How about methotrexate?” “Well if you think you want to try?” “Yeah, I kinda do”. So I started on MTX and that’s helped a lot. …but now not enough. We upped my MTX from 20mg’s to 25mg’s and my labs went ding-ding! again. So the doc said I should go back to 20mg’s. Hello? That didn’t work. Ghosting again and back like a bumerang. A lot of smiles and empathy like you would with a hypochondriac and dismissed. Because I wasn’t prepared enough.

Here’s where it gets funky. I’ve tolerated NSAID’s fairly well, but this summer we tried low dose naltrexone LDN. It did something, but more than anything it irritated my intestines and nervous system. I did sleep better and night sweats were less. So I came off those and went back to my GP, who was appalled to hear my case isn’t going anywhere. He put me on arcoxia, to help with pain and inflammation and because it was milder than ibuprofen.

I noticed day by day my fingers swelling and joints getting more and more painful. I was also gaining weight and fast. I stopped them and soon did a short trial run with ibuprofen . Same thing. I went back to my GP and he was on the ball and he took me off the meds and said that this is a symptom off your intestines reacting to NSAIDs. Your irritated intestines cause nervous symptom issues and the swelling comes from inflamed blood vessels. So I went on a Chrons-like diet and in the morning (my choice of time) an hour or two I take a mild diuretic so that my feet won’t hurt as much when I get up and my fingers work better.

Right now I’m on paracetamol and codein and the mild diuretic until I get back in the ring with my rheumy. I don’t want steroids, because when I go off them the symptoms come back with a fury. I’m preparing for biologics myself and with research noted that there is a semi-synthetic on the way soonish.

So moral of the story that was too long, be prepared for:

what if the dose turns out to be wrong? What if the med turns out to be wrong? Nervous system issues might be coming from your gut (inflamed gut causes nervous symptom hypersensitivity -> Intestinal Bechets). And remember, the gut axel starts from the tip of your nose all the way to … the end. Not kidding; I have an ulcer now right at the tip of my nose and sinusitis. Blood vessels are all over the body so vasculitis can affect any part of the body, swelling is a symptom of vascular inflammation.

Keep being tenacious!