side effects – Another MS Warrior

133 A few updates

Work

With the start of the new term, I have been back at work this week. Thankfully, my employer continues to advise that all those who can work at home, should do so. As a person with chronic illness and disability, there are advantages to working from home – mainly that I can get up, log on and just get on with it, rather than negotiate the challenges of rushing about to get ready, sorting out a packed lunch and driving to the office. In the past, I would often arrive at work feeling exhausted from the efforts to get there. I don’t miss the parking issues, queues for the lift, long walk to the kitchen or having to go up or down a floor to visit the ladies. Now I’m starting my working day feeling fresh and ready to go and I haven’t used any unnecessary spoons just to get to that point.

You can read more about Spoon Theory here … The Spoon Theory written by Christine Miserandino

My cats have loved having me at home over the last few months and one in particular loves his morning snuggle on my knee each day. He’s not at all happy that some mornings I’m now sitting at my desk and my knee is no longer available …

Of course there are down sides to working from home and I miss the contact with colleagues and face to face kitchen chats to quickly agree actions or find out information (all so much more formal and convoluted by email).

I have no idea what the new version of normal will be in the future, but I hope there will be continued opportunities to work from home, at least for part of the time. I really feel this would help me to stay in work for longer – better for me and better for society. I know that many disabled people around the world are feeling this too.

House move

Over the last couple of months, I have come to the conclusion that now is the time for me to move to a home without stairs. Thankfully, I haven’t had any further falls, but I’ve had lots of wobbles and near misses. I’m anxious about the stairs every time I use them or cross the landing to go to the bathroom from my bedroom. I love my little house and garden and I love the community I live in, but it’s not right to continue living like this for a longer period of time.

I have considered the option of having a stair lift fitted, but that wouldn’t take away my daily fear of falling from the top. I also have a cellar here, which is another challenge, as for some reason no one thought to install a handrail. The loft is also difficult to access and I don’t like having to ask for help whenever I want anything to go up or down. In addition, this house is well over 100 years old and so needs continual maintenance and is expensive to heat.

So, I am now in the process of getting my house ready to sell. I’ve only been here for 3 years, and there was a lot of interest at the time of buying it. The housing market in this area seems buoyant, at least at the moment, so I feel this is the right time to go. I have a plan coming together on where I’m moving to, but will keep that under wraps for now.

HSCT

HSCT has started again in Mexico and I’m already aware of a couple of Brits who have made that journey and are now recovering at home. The clinic in Russia is admitting patients again but I think visa issues have held up any Brits trying to get there. Hopefully this will be resolved soon.

I understand that some patients have started HSCT at the London hospitals, but no one is being treated in Sheffield just yet.

I have an MRI scan in Sheffield on Thursday. Professor Sharrack plans to compare this to the scan I had last July and if he can see new disease activity, he may still consider me for HSCT, which would be amazing. I have very mixed feelings about this. I started a new DMT (disease modifying therapy) a few months ago, which is hoped will reduce disease activity so it would be great if things are calming down. I have a feeling the scan will show a little activity, but not enough to meet Professor Sharrack’s criteria!

I used to find the MRI machine terrifying – feeling trapped, unable to move, cut off from the world and with all manner of super loud clunking and grinding noises going on, but I’m obviously becoming desensitised now, as I haven’t started worrying about it (yet)!

Tecfidera (DMT)

I am pleased to report that the initial flushing, rashes and itching triggered by Tecfidera have mostly stopped now. I still have the odd day when this happens, but it’s much milder. I haven’t yet spotted a link that would explain why it sometimes happens, but more often doesn’t. I have a blood test at the end of September to check liver and kidney function and once that’s cleared, there’s just possible hair loss to worry about!

Many thanks to family and friends for your continued support with all these ups and downs ?

25 The drugs don’t work

Well it’s been a tough week here in Warrior Towers, mainly because Rebif and I just don’t get along at all!

I have been injecting 3 times per week, following advice about keeping hydrated and experimenting with timing, but rather than the severity of the side effects easing up, they have actually got worse. By last Friday morning I was throwing up and by Monday was overwhelmed with continuous nausea, fatigue and headache and was unable to work. I was barely sleeping and was also peeing blood! (Apologies to squeamish readers!)

By Tuesday evening, when my next injection was due, I decided not to carry on. My MS Nurse isn’t pleased but understood when I explained how I was struggling to function. She tells me such reactions are unusual, however, fellow patients tell a different story. There are some patients who sail through, with few or no side effects and feel great on Rebif. But there are quite a few just like me, who are unable to tolerate it at all.

Further research has revealed a known link between Rebif and UTI (Urinary Tract Infection) with higher incidence in females and those in the 45 to 60 age bracket. I now seem to be more knowledgeable than the nurse!

I was never planning to take Rebif as a long term measure but was hoping that it might hold off another relapse until I can access HSCT. When I saw my neurologist in June, he predicted I would have another relapse “soon”, so I’m keen to do all I can to avoid this.

Five days after my last injection I’m now feeling much better. My sleep has improved and today was the first morning in a while that I haven’t felt sick on waking. The antibiotics are kicking in and I’m feeling a little less foggy headed!

So now I’m left with a difficult decision – do I wait a bit then try again, do I try another drug or do I just do my best to look after myself in the hope that I won’t relapse before I have HSCT?

If you have any thoughts on this, let me know in the comments below ??

GoFundMe

22 Rebif: week one

Today was my fourth day of self-injecting Rebif (3 times per week). I’m finding the actual injecting fairly easy. My idiot proof injecting gadget does most of the work and it’s mostly not too painful (it hurt a lot on Sunday but much better today so I must be getting the hang of it!).

Unfortunately I am struggling quite a bit with side effects. Following advice, I have been injecting in the evening so that I can sleep through the peak time for side effects …only I don’t sleep through them! So I now have 3 nights a week feeling cold, shivery and achey all over, each followed by a day of feeling light headed, exhausted and nauseous. By the following evening I feel fine again.

I am currently on a very low dose of 8.8mcg with a gradual increase to the full dose of 44mcg.

I’ve asked for advice on an MS support group and it seems these side effects are not unusual, although most people don’t experience them until they reach a higher dose. Apparently it can take several months to acclimatise and for side effects to settle … already I know I can’t live like this for several months!

This evening I have followed advice and have injected earlier in the evening, taken paracetamol an hour before and am drinking lots of water …fingers crossed I have a better night tonight.

GoFundMe

18 Rebif

Today I had training on how to self inject Rebif, in the hope of delaying a further MS relapse. My daughter came with me to hold my hand and support me by taking in all this new information too, however, I needn’t have worried. I have been given a magic gadget that does most of the work and as the needle is very fine, I barely felt a thing!

Rebif is also known as Interferon beta 1a and is a real money spinner for its manufacturer, Merck. I have been told that this drug costs the NHS £11,000 per year for each patient – I can’t find any confirmation of this online but have found mention of 5,000 USD per month. I imagine the NHS must have some sort of supply deal with Merck.

It’s all a bit mind boggling! This drug is not going to make me feel better, it won’t cure my MS or stop it progressing but it might reduce relapse rate by up to 30% …or it might not. Even when/if I have another relapse, it will be impossible to know the impact Rebif has had on this.

The potential side effects are also mind blowing! Injection site reactions, flu-like symptoms and depression are common and there are other less common ones too. I will need blood tests every 3 months to check my liver and kidneys aren’t being damaged by the drug. Writing this, I am wondering why I am even taking it!

Rebif is one of the kindest MS drugs – there are others that are more effective but the side effects are scary – permanent damage to the immune system, increased cancer risk, severe depression and suicidal thoughts – I don’t ever want to try these ones!

I have my fingers crossed that we can raise the money needed for HSCT so that I don’t have to think about these drug options again and my body has a proper chance to recover from the MS monster.

GoFundMe

11 More about stem cells …

As mentioned in a previous post, I have spent the last few months researching HSCT (stem cell transplant) to find out more about what is involved and to see whether it might be a good option for me …I have come to the conclusion that it is!

I have also been finding out more about other treatments for MS, so that I can make a reasonable comparison. There are several treatments (Disease Modifying Therapies, DMTs) available – non of them cure MS – they have varying degrees of effectiveness in reducing the number and severity of relapses and for some have no impact at all. All DMTs bring potential side effects and short and long term health risks.

Side effects include stomach upset, flu like symptoms, injection site issues, low mood and suicidal thoughts (as if having MS isn’t enough!). Side effects are common and patients often have to try several different drugs before finding the one that suits them best.

The mechanism by which most of these treatments work is unknown, however, all work to reduce the effectiveness of the immune system. This means that patients are at risk of repeated infections (stomach bugs, coughs and colds, fungal infections, urinary tract infections, cold sores etc etc). There is also an increased cancer risk and little is known about long term use, as the drugs are fairly new. In March 2018, one DMT was withdrawn after a serious risk to life was identified – it had been introduced just 2 years previously. One of the most powerful DMTs is known in some circles as “Liquid HIV” because of its devastating effect on the immune system.

So, how does HSCT compare.

Well, it’s true to say that HSCT is an invasive and challenging treatment. Chemotherapy is no walk in the park and there is a period of time when the immune system is so low, that there is serious risk, even from minor infections. Recovery from HSCT can be slow and difficult and patients must be prepared to work hard to regain fitness.

But, once fully recovered, there is no need for further treatment, no compromised immune system and, for many, no MS! HSCT is effective in halting the disease in 70-90% of patients …no DMT comes near this.

HSCT is not widely available on the NHS (yet) but there is hope amongst patients that change is coming. A major international trial has been taking place over recent years, including patients treated in Sheffield (referred to in the BBC link in an earlier post). HSCT for MS is currently available in two London hospitals and there are whispers that other hospitals are beginning to treat a small number of patients. The MS Society, MS Trust and other patient support groups are beginning to provide information on HSCT and the tide is slowly turning.

MS-UK has a useful write up about HSCT here.

UK hospitals are already very experienced in providing HSCT as it is almost the same treatment as used for leukaemia and other blood cancers. Haematology departments are able to use a percentage of their budgets to treat non cancer patients and this is how some MS patients are able to access it.

Now I’m working on finding out how I can access it too.