drugs – Another MS Warrior

80 Escalation vs de-escalation

I thought I’d write a post about my views on the treatment escalation model for Multiple Sclerosis widely used in the UK and throughout the world.

There are currently 13 Disease Modifying therapy drugs available in the UK and these are categorised by efficacy in to three groups: Moderately effective, More effective, Highly effective.

Potential side effects are more severe for the drugs with higher efficacy.

Discussing DMTs is always challenging as they all seem to have such complicated, hard to pronounce names and on top of this, most are known by two names – the generic drug name and the brand name. Bear with me if you can!

I have cobbled this together from the MS Trust website, to show the drugs in their three categories …

Further information can be found here … MSTrust

Most MSers are offered DMTs following an escalation model that looks a bit like this …

Patients are initially offered first line treatments, also described as “moderately effective” drugs. If they continue to progress or relapse, or are unable to manage side effects, they are then offered an alternative first line treatment. As these drugs can take many months to have an impact, each cycle of trying and failing can take up to a year or more.

Once first line treatments are deemed to have failed, patients are offered second line treatments and eventually third line or “highly effective” treatments.

By this time, several years may have passed and the MSer may have acquired significant permanent damage to their brain and spinal cord, resulting in long term disability and daily difficulties.

DMTs don’t treat symptoms, reduce pain or improve disability. In a sense they are an attempt to “future proof” and reduce further disease progression and damage to the central nervous system. Many MSers and indeed, neurologists are now asking questions about why patients can’t be offered HIGHLY EFFECTIVE treatments from the onset of the disease. Imagine being offered a treatment that has a higher likelihood of reducing relapses and progression and therefore reducing damage? It makes perfect sense to me.

For many, the most effective drugs will control their MS and allow them to live a normal life. For others, they will still have occasional breakthrough disease, which can then be addressed by one of the lower efficacy drugs.

Several high profile forward thinking neurologists are now actively promoting this de-escalation model as a more effective treatment plan than the current escalation model. Some are also including HSCT as a first line highly effective treatment.

Some neurologists are no longer offering first line treatments at all. These are mostly drugs developed 20-30 years ago which, at the time, where the only treatments available. Newer more effective drugs have become available but for some reason, these drugs with low efficacy are still being broadly offered. This doesn’t seem to happen in relation to treatments for other conditions. When newer, better treatments are developed, the older less effective treatments are relegated to history. This hasn’t happened with MS and it’s really not clear why.

Change is slow to come and all the time each person with MS is experiencing more damage to their brain and spinal cords. My own neurologist is stuck firmly to the escalation model, meaning it could be several years until I qualify for highly effective treatments …by which time I could be experiencing much worse symptoms, but may be too old to be considered for those treatments.

Many people with MS are frustrated with the system and the neurologists who care for us. The disease is like a ticking time bomb and we each have no idea how it may progress over time. Even those whose disease appears inactive, may be experiencing silent progression in the back ground. Leaving us to deteriorate whilst denying us the most effective treatments is devastating.

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Tomorrow, this gorgeous young man is taking part in a sponsored fun run to help raise funds for my treatment. Good luck Bobby …you are a superstar!

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.

5 Saying NO to drugs

Like most who have MS, I experience daily pain, spasticity and nerve pain. I don’t want to make a big deal of this, as luckily, my symptoms are fairly mild and mostly manageable. I have been offered pain killers, and steroid treatment but have so far declined. Many also take medication to deal with spasticity and sleep problems too. I am not in the least bit critical of those that use these meds and I don’t think I’m being strong or brave for avoiding them – the real reason is that they scare me!

For the time being I am taking the following:

* Vitamin D – there is a lot of evidence of the link between low Vitamin D and MS and it’s even possible to plot incidence of the disease against distance from the equator (even our bodies are joining in with the North/South divide!).

* Co-Enzyme Q10 – thought to contribute to brain health.

* Magnesium Oil Spray – I find this can really help with leg spasms and the effect is almost instant. It’s supposed to also help with sleep. Apparently we are all likely to be low in magnesium (due to intensive farming lowering soil levels), and absorbing through the skin is a safe and easy way to supplement.

* Omega 3 Fish Oil

I’m considering trying this vegan alternative from Nothing Fishy next time I need to buy. Please let me know if you’ve tried it.

In the winter, I find a hot bath very soothing and also find massage, swimming and hot tubs really help. I am off on a Spa day tomorrow with my lovely daughter Niamh, so that will keep me going for a while.

Next on my list is yoga …

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