Rebif – Another MS Warrior

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

19 First £1000

Well today has been a rather emotional day for me and my family. We launched our fundraiser just a few days ago, very unsure of how it would fare and mostly hoping not to offend anyone because we are asking for money …today we reached our first £1000!!

By the wonders of technology, I heard about this through a WhatsApp from my sister in Germany (I love how technology helps us to stay in touch with loved ones who are many miles away!), so quickly checked the GoFundMe page.

Not long after this, the fund received a flurry of donations from various good people from Stephenson’s Catering Equipment. Both my children work for Stephenson’s and they decided to share the appeal with their managers and colleagues – their generosity has really touched us …thank you everyone.

Stephenson’s are worth checking out if you need any kitchen or catering equipment – they sell to members of the public as well as to bars and restaurants. They are also taking steps to provide environmentally friendly products and have the biggest selection of paper straws I have ever seen!

Click here for more …

In other news – no adverse reactions to my first shot of Rebif. Fingers crossed for the next one on Thursday ??????

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

4 Saying YES to drugs

Treatment for MS is limited to a range of drugs known as “Disease Modifying Drugs”. None of these is able to cure MS, halt progression of the disease or repair existing damage. The aim is to reduce incidence and length of future relapse …”future proofing” as my MS nurse liked to call it.

When I was initially diagnosed (2017) my neurologist was of the opinion that my MS was becoming inactive and that I may not have any further relapses so I decided to decline DMDs at that time.

This year I am in a very different position so have agreed to try drug treatment. This has been a really difficult decision for me – I don’t like the idea of taking long term medication and I am very concerned about side effects and long term impact on the immune system and the body. In addition, most of the drugs I am being offered are described as just “moderately effective”. There are more powerful drugs available but these come with worse side effects and much higher long term risk, so I’m hoping to avoid them.

So, in a couple of weeks time, I will be starting Rebif.

I will have to self inject three times a week – I found this rather a daunting thought until I chatted with my friend Beth about it. Two of Beth’s children have Type 1 Diabetes and have been self injecting and regularly checking their bloods for some time. So, Molly and George, you may not have realised it but you have inspired me from afar! Thank you!

More information on Disease Modifying Drugs can be found here …

MSTrust