So, if you have been keeping up with this blog, you will remember that Ady came off the methotrexate as he felt it was doing bugger all.
His rheumatologist offered him a couple of other drugs in its place. One called something or other with lots of ‘X’, ‘U’s and ‘R’s in the name. One of the side effects written down was that it could cause certain types of cancer...well who the bloody hell in their right mind would want to take that...I ask you !! and the other one was called leflunomide which didn’t seem to cause certain types of cancer. All of these drugs have pretty heavy duty chemicals in them, so even if they don’t cause cancer, they probably bugger the rest of your system up instead, which is why you have to be monitored so closely with constant blood tests and such like.....anyway, Ady started on the Leflunomide and bugger me...up to the moon he went...he was as high as a kite, completely washed out, slept all day and just couldn’t focus on anything.
He said it felt horrible so I rang the rheumy nurse and she suggested taking the tablets every other day to see if it made a difference and once he got used to that, he could go every day, but don’t give up just yet, and anyway, she said it could be the morphine. Ady insisted it wasn’t the morphine, he knew how that made him feel and this was a different feeling altogether.
So we went down to one every other day and you could tell the day he had his tablet as he was completely washed out and fuzzy and on the tablet free day, he was fine. We spoke to the rheumy nurse again and she said to stop the tablets for a week and then try again to make sure it was the tablets causing the problem.
In the mean time, we saw our now long suffering GP, who by the way is still the best one anyone could ever have and is fantastical! And when we told him what was happening and that Ady was going to try the tablets again in a week. He thought that Ady shouldn’t put his body through more turmoil when it clearly is the tablets not agreeing with him.
He agreed to get the rheumy appointment brought forward so we can see if we can get Ady’s arthritis under control. He could see that depression was kicking in and Ady agreed to not try the tablets again.
Poor Ady, he desperately wanted to be getting back to work. He hates being unable to provide and says “but it’s only arthritis, it must be something more, it’s never been this painful”
I went off and had a good old google. Christ, have you ever looked on an arthritis forum? Poor, poor people is all I can say. They suffer the same way Ady does, some more so and some less so, but they all talk of the same pain and the same problems....the same medications and the same side effects.
I read some out to Ady that were relevant to him, and I think he was coming around to the idea that it can be ‘just’ arthritis causing all his woes.
We went off and saw our rheumy chap, really hopeful that something can be done about the pain especially.
Well, what a disappointment that was!
The day we really needed him to really listen to Ady and to understand and look at his joints, empathise and take some time with him and he did none of it. The whole visit, we felt, was a waste of time. Ady actually felt a bit of a fraud and his feelings that perhaps he should get back to work came flooding back.
I had worked really hard, trying to get Ady to see that everything he was going through was caused by an arthritic flare. It even said on Google that stress is one of the big causes of arthritis flares and Ady has been pretty stressed over that last couple of years!
Our Rheumy guy suggested that Ady should go back on the methotrexate, saying that his symptoms had got worse since he came off them. We told him that no, he came off the methotrexate because his symptoms had gotten worse while he was on it, suggesting that it was no longer working. So Mr rheumy said that instead of tablets, he should inject it instead, it will be stronger and have more of an effect.
We were to make an appointment with our lovely nurse for training on how to give the injection. Ady was not happy at all.
Our lovely nurse who has known us for at least ten years could see that we were a bit pissed off. We told her what had happened and she suggested that we could do with a second opinion and she knew just the chappy who enjoyed a challenge!
We were to wait for her to ring us with an appointment.
True to her word, she did ring us the next day with an appointment for Friday at 10.30 with DrB.
Oh, my, God, what a nice man he was!!
It turned out that our lovely nurse had quietly pulled a few strings to get us this appointment, and had spoken to MrB about us and he agreed to tag us on the end of his surgery. He spent over an hour with us. Bloody hell !!
He went through everything from top to toe.
He explained that Ady has a bulging disc which is pinching his nerve causing sciatica down his left side. He had a pain that started in the middle of his chest which went right through to the back and radiated throughout his shoulders and has finished at the top of his spine. That is all to do with degeneration.
He had a good look at his hands and then moved onto his feet. It was fascinating!
Ady stood on the floor and MrB said “Hmm, you have big problems with your feet”
He got Ady to lie on the bed while he examined him. I really wish I had recorded it cos he told us so much!
He explained that there is a nerve running down each side of the foot. Because Ady’s ankle is collapsing inwards, it is pinching the nerve on the inside and because his actual ankle joint has collapsed, that is pinching the nerve on the outside. He prodded and poked various parts and said where there would be pain and what exactly was causing it and all how the foot worked.
He also said that Ady’s Achilles tendon was inflamed due to the type of arthritis he has and his toes were numb because of nerve damage. Basically his feet are buggered, but the left one more so.
He even let me loose with the whacky thing to whack on the knees to check for reflexes and the pokey thing you run on the sole of the foot. He then said that he would give Ady a steroid injection into his ankle joint and wrist joint to ease the inflammation.
Ady did hope that he wasn’t going to let me loose with the fecking great big long needle and start jabbing that in him!
Ady had the wrist injection without a problem, but when it came to the ankle injection, MrB couldn’t get the needle in the joint...at all. Poor Ady was lying there, I have to say, being far better behaved than I would ever be, while the consultant was wriggling the needle around trying to get it in the joint.
In the end, he decided that he needed some ultrasound help, so we all went off to the ultrasound room.
As we were walking down the corridor, the consultant asked our nurse to get leaflets and information on fatigue caused by arthritis, some info on psoriatic arthritis and another one on feet and podiatry.
He told Ady that after what he has been through the last couple of years, he is not surprised at all that he arthritis is causing problems and that he will most certainly have fatigue, bad enough to make him feel that his thyroid has packed up.
Ady told me later that he was so relieved to find someone that completely understood, he felt like doing cartwheels up the corridor!
Blimey, this is going on a bit so I will do a part two....hang on.....