This year started out ok, we'd had a good Christmas in Bournemouth with Martin's family and we were feeling quite positive for the year ahead but then the unthinkable happened, Martin's Dad had two catastrophic heart attacks and on 15th January he passed away, surrounded by his family and loved ones. It was awful and unbelievable, he was only 63 years old, how could that happen? He had had a stroke last year and was recovering well but something we didn't know was that having had a stroke it made him susceptible to having a heart attack.
The things we were most thankful for were that he didn't suffer and we'd been there at Christmas, in fact Martin and his two sisters had been with their Dad all at the same time for the first time in a long time and I had suggested taking some photographs of them all. Little did we know that they would be the last photos of the four of them together. Devastating.
Now on to my MS and a catch up on where I am.
On June 30th 2014 I had been on Tysabri for five years and I was beginning to question why I was on it. I would have the infusion on a Thursday and I had to make sure there was nothing planned over the weekend because it would wipe me out for those few days after it. I didn't really feel any benefit from it either. I had conversations with other people who were on Tysabri who would feel a definite benefit, they would feel when they were close to having an infusion and they would pick up and feel better after that infusion but I never felt those things at all.
It's true that there was no evidence that I had had a relapse while I'd been on it either so it was with trepidation that I asked the question whether I could take a break for a few months from the infusions. I just felt that I was putting this potent drug into my system, it was taking it's toll on me for a few days each month and I had no evidence that it was actually helping me. The trouble was that by taking a break I was possibly setting myself up to having a relapse, so I needed to make sure that if that happened would I be able to go back onto Tysabri.
I had a good conversation with my consultant and GP and then Martin and I both felt that we were happy that things were in place for me to take a break, so I had my last infusion on 28th August 2014. We were looking at taking six months depending on what did or didn't happen.
By the end of February 2015 things were going fairly well, especially having had the emotional trauma of losing Martin's Dad. But in March I started to feel an increase in my pain. It's difficult to describe because no one can see it but it is intense neuropathic pain which can be incredibly painful. My skin was feeling very sensitive, even putting clothes on was getting horribly uncomfortable.
I contacted my consultant and explained what was going on. He was taking time out for his research and so I would be seeing someone else on his team but he organised for me to have an MRI to check whether there was any activity with my MS. The scan came back that it was unchanged from previous scans. This was positive but I always find it frustrating because, to me, it means there is no evidence to back up what I'm feeling. I have always had an issue with people believing me about my symptoms. So much goes on what I say about how I feel because so many of my symptoms are invisible. I know it sounds ridiculous and there are complicated reasons for why I think like this but I'm not going in to that now! 😉
I had an appointment in March with a neurologist and it was actually quite nice to see someone different. I have been with my consultant since my first big relapse in 2003. He has been so good to Martin and I and when he had to stop doing clinics at my local hospital, I was given the choice, I could stay with him but my appointments would be in Plymouth or I could change over to the neurologist at our local hospital. I knew straight away that I would stay with my consultant as he knew me, no actually he knew us. I'd had his support when Martin was poorly and he's always had my back! But seeing someone different after twelve years was refreshing.....it was a new set of eyes on my case!
First of all he asked if I was on Vitamin D3. I wasn't so he suggested that I start it, at 5000iu a day. He said that he makes sure that all his patients are on it. Apparently there is evidence to suggest that there is a link between low vitamin D3 in your system and MS. I have no opinion either way on it but I am taking it for now to see if it helps to make me feel better!
The next thing that happened was that for the first time I saw my MRI scans! I have never seen them up to that point so it was interesting to see the lesions on the scans. It was also quite liberating because the consultant actually explained to me that where some of the lesions were was the reason I have trouble walking. And he said he also knew that I have a struggle with fatigue, again because of where the lesions were. It was quite amazing because for the first time I actually saw the evidence that I was looking for that shows me that there is the reason that I have Multiple Sclerosis.......silly eh?! 😉
The next thing we talked about was the Tysabri infusions and the fact that I was on a break from them. We discussed how I felt since I'd not been on Tysabri and apart from the increased pain that had started recently, I had been doing pretty well. This was all good but he wasn't happy that I wasn't on any of the DMD's - Disease Modifying Drugs. It meant I wasn't on anything that could help my body fight the progression of the MS. Over the years more DMD's are being tested and approved for use in fighting the disease progressing, mainly for people who have Relapsing Remitting MS.
There are a group of DMD's called Interferons, these include Rebif and Avonex. Then there is a fairly new drug called Tecfidera - BG12.....it was only granted NICE approval in August 2014 to be used for people who have Relapsing Remitting MS. This one is a bit more potent than the Interferons. Then there is Tysabri which is more potent again. There are other drugs as well, these include Campath and Fampridine or Fampyra. These are all designed to help specific symptoms or to help slow down the progression. MS is such a complicated illness and everyone is affected so differently, which makes treating the disease very difficult. There is no "one drug suits all" with MS. Things will work for some but not others and it really is trial and error to find out what works for you. I have tried several and I'm still looking for my "wonder" drug!
As the consultant wasn't happy that I wasn't on anything that could potentially help slow down the progression, he suggested that I start on the reasonably new drug called Tecfidera - BG12. It's not as strong as Tysabri but he felt it was better that I was on something rather than nothing......we agreed and so he set up for me to see one of the MS nurses with a view to starting this drug. There were several plus points to this medication, it is a capsule that is taken twice a day, so no nasty infusions......and the medication gets sent directly to your door, so no trips to the GP or hospital, which sounded good to me!
I had an appointment in March with a neurologist and it was actually quite nice to see someone different. I have been with my consultant since my first big relapse in 2003. He has been so good to Martin and I and when he had to stop doing clinics at my local hospital, I was given the choice, I could stay with him but my appointments would be in Plymouth or I could change over to the neurologist at our local hospital. I knew straight away that I would stay with my consultant as he knew me, no actually he knew us. I'd had his support when Martin was poorly and he's always had my back! But seeing someone different after twelve years was refreshing.....it was a new set of eyes on my case!
First of all he asked if I was on Vitamin D3. I wasn't so he suggested that I start it, at 5000iu a day. He said that he makes sure that all his patients are on it. Apparently there is evidence to suggest that there is a link between low vitamin D3 in your system and MS. I have no opinion either way on it but I am taking it for now to see if it helps to make me feel better!
The next thing that happened was that for the first time I saw my MRI scans! I have never seen them up to that point so it was interesting to see the lesions on the scans. It was also quite liberating because the consultant actually explained to me that where some of the lesions were was the reason I have trouble walking. And he said he also knew that I have a struggle with fatigue, again because of where the lesions were. It was quite amazing because for the first time I actually saw the evidence that I was looking for that shows me that there is the reason that I have Multiple Sclerosis.......silly eh?! 😉
The next thing we talked about was the Tysabri infusions and the fact that I was on a break from them. We discussed how I felt since I'd not been on Tysabri and apart from the increased pain that had started recently, I had been doing pretty well. This was all good but he wasn't happy that I wasn't on any of the DMD's - Disease Modifying Drugs. It meant I wasn't on anything that could help my body fight the progression of the MS. Over the years more DMD's are being tested and approved for use in fighting the disease progressing, mainly for people who have Relapsing Remitting MS.
There are a group of DMD's called Interferons, these include Rebif and Avonex. Then there is a fairly new drug called Tecfidera - BG12.....it was only granted NICE approval in August 2014 to be used for people who have Relapsing Remitting MS. This one is a bit more potent than the Interferons. Then there is Tysabri which is more potent again. There are other drugs as well, these include Campath and Fampridine or Fampyra. These are all designed to help specific symptoms or to help slow down the progression. MS is such a complicated illness and everyone is affected so differently, which makes treating the disease very difficult. There is no "one drug suits all" with MS. Things will work for some but not others and it really is trial and error to find out what works for you. I have tried several and I'm still looking for my "wonder" drug!
As the consultant wasn't happy that I wasn't on anything that could potentially help slow down the progression, he suggested that I start on the reasonably new drug called Tecfidera - BG12. It's not as strong as Tysabri but he felt it was better that I was on something rather than nothing......we agreed and so he set up for me to see one of the MS nurses with a view to starting this drug. There were several plus points to this medication, it is a capsule that is taken twice a day, so no nasty infusions......and the medication gets sent directly to your door, so no trips to the GP or hospital, which sounded good to me!
I met with one of our MS nurses who went through everything about Tecfidera - BG12. I needed standard blood tests done to check everything before I started the drug, the prescription gets sent to a company called Alcura, who are the people who manufacture the drug and they send it directly from them to your home. It took two and a half weeks between me saying I would try it to it arriving on our doorstep!
There are side effects with this medication, as with most medications, and there is also still the risk of PML - Progressive Multifocal Leukoencephalopathy, when taking BG12 but it's not as high a risk as with Tysabri. You also have to be tested for the JC Virus, this is a specialised blood test that is done and sent away to see if your positive or negative for the virus. If you are positive, it means that you're at a higher risk of developing PML but there has only been one death in the UK from PML and, as I understand it, that person didn't have MS. The general side effects from BG-12 are that it can give you gastrointestinal problems and hot flushes. The nurse said that if you take it with something that has fat and protein it can help to stave off some of the gastro issues and she suggested peanut butter on toast was a good one to take it with. I have to admit that I like peanut butter so I have been having a piece of that every morning with my capsule. The first morning I took it the only problem I had was a hot flush......I'd never had one like it before.....but I didn't get one in the evening and to be honest, I've only had three or four in the two and a half weeks that I've been taking it. And so far so good, I haven't had any stomach problems so I'm hoping that continues!
I had been hoping that taking this medication would make a difference to this relapse but that was me clutching at straws. This relapse has happened and none of the DMD's would make a difference to it now, I just have to let it run its course and any damage that's been done can't be reversed now. I knew this, of course, but I was still hoping that it would help. I was explaining it to a friend of mine who asked what was the point of taking this if its not going to help? I explained that like Tysabri and the others, it doesn't change what has been done but it helps to slow down any future progression of the MS.
One thing with this relapse, something I haven't had for years, is a thing called L'Hermittes sign. This is a typical symptom of MS and is a fizzing sensation that travels down the back into the arms and fingers which is brought on by bending the neck forward. It is the most bizarre sensation and I thought I was going mad when I first experienced this but when I explained it to the consultant, he immediately knew what I was talking about, which was comforting! I had this symptom after my first big relapse in 2003 and it stayed for a couple of years but I haven't had it since. It really does feel like a small electric shock or a fizzing that travels quickly down my back. I had forgotten how annoying it can be just from moving your head forward!
So as things stand I am waiting to see my consultant, I have an appointment at the beginning of July and in the meantime I am just trying to live the best I can with this relapse and the issues that have come with it. I am working hard with a Physio to try and get my legs stronger. I went to her yesterday and we are already noticing a difference in my right leg. She says she can see that my left leg is working hard but I can't see or feel it myself. I get impatient and I want to see changes immediately but it doesn't work that way does it?!
And in the meantime, Martin is doing so much for me because I am so unsteady on my legs and I am still pretty much dragging my left leg around. It means that I can't stand for long without my legs giving way and being in immense pain, so I'm unable to do any cooking or sorting out washing or any of the household things......I can't even feed the cats......and because we live in a house, our bedroom and bathroom are upstairs and just climbing those stairs is both time consuming, painful and energy zapping. I have to plan things carefully so that I go up and down them as few times as possible in a day. I really hope I get over this relapse soon and with the least amount of damage possible......fingers crossed!
XxXxX
