DMT – Another MS Warrior

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me ??The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can ?

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.

———————————————-

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!

72 TLAs (Three Letter Acronyms)

I work for the VST as a TLC alongside some ESWs. We work with LAC (or CLA) and we are always ready to provide a quick response to NIC. I have particular responsibility for EY LAC and we have regular contact with professionals from CSC, SEN and BSS. Acronyms are everywhere!

The world of MS has them too, although most are FLA! I thought I’d share a post about some of the acronyms and vocabulary used in MS.

MS – Multiple Sclerosis

CIS – Clinically Isolated Syndrome: A single attack (or “Sclerosis”). Many with MS are diagnosed with this following their first attack or relapse. For some reason, I was initially diagnosed with two episodes of CIS (which seems somewhat contradictory to the meaning of the word “isolated”!).

RRMS – Relapsing Remitting Multiple Sclerosis: MS which is characterised by attacks or relapses alternating with periods of stability. Some neurologists argue that! with MS, there really is no period of remission, therefore using the word “Remitting” is misleading. I am currently recorded as having RRMS.

RMS – Relapsing MS: Being used by some neurologists instead of RRMS

PPMS – Primary Progressive MS: a presentation of MS characterised by continuous progression, with no relapses or periods of remission. 10-15% of new diagnoses of MS are of PPMS.

SPMS – Secondary Progressive MS: around 50-80% of those initially diagnosed with RRMS will become secondary progressive at a later stage. I recently asked my neurologist if I was secondary progressive and he replied “well, you’re certainly on your way there”.

https://youtu.be/CgQfI0ZFvoo

MRI – Magnetic Resonance Imaging: used to view the health of the brain and spinal cord to aid diagnosis and monitor progression of MS.

DMT / DMD – Disease Modifying Therapy / Disease Modifying Drug (These terms seem to be used interchangeably so I assume they have the same meaning)

NEDA – No Evidence of Disease Activity (what we’re all aiming for!)

HSCT – Haematopoietic Stem Cell Transplant

AHSCT – Autologous Haematopoietic Stem Cell Transplant: an Autologous Transplant is one in which the recipient’s own tissues are returned to the body. Allogenic describes transplants where tissue is donated by another. Allogenic Stem Cell Transplant is considered far too risky as a treatment for MS.

CNS – Central Nervous System: the brain and spinal cord

CSF – Cerebral Spinal Fluid: This is the fluid that surrounds the brain and spinal cord. CSF is extracted during a lumbar puncture (or spinal tap) and can be tested and examined in a number of ways. Most people diagnosed with MS have “Oligoclonal Bands” present in the CSF at a higher level than in the blood. I had a lumbar puncture in 2017 which identified the presence of oligoclonal bands and confirmed my MS diagnosis.

PwMS – People with MS

NICE – National Institute for Health and Care Excellence

EBV – Epstein-Barr Virus: A common virus that causes glandular fever. I have included this as there is growing evidence that exposure to EBV may be a contributing factor to developing Ms for some.

EDSS – Expanded Disability scaled Score: Used to measure disability in MS. A recent neurologist letter records my EDSS as 6, however I feel it is nearer 5.

TTFN xx

GoFundMe

67 HSCT trial outcome …it’s good news!

This has been an exciting week in the world of MS and HSCT, as the final analysis of the MIST trial has been published in the Journal of American Medical Association (JAMA).

The trial compared the effectiveness of HSCT against a control group of patients who were given conventional Disease Modifying Therapies. The trial included patients treated at 4 centres across the world – Chicago, Uppsala (Sweden), Sheffield and São Paulo (Brazil).

The findings of the trial were that HSCT was more effective in terms of halting disease progression than any DMT.

This visual summarises the findings …

Here is a link to the published report …

Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis : A Randomized Clinical Trial

As you can imagine, this has caused a huge ripple in the medical world and it is now estimated by some that HSCT as a treatment for MS could be FDA (US Food and Drug Administration) approved within 2 years.

Here’s CNN’S take on it …

Stem cell therapy for relapsing MS proves effective and safe, study finds

“HSCT proved to be the more effective treatment: Of 55 patients receiving HSCT, only three patients showed disease progression at one year, the study showed. Yet, 34 of 55 patients in the disease-modifying therapy group showed disease progression at one year. Disease progression was measured using the Expanded Disability Status Scale, a method for monitoring changes in symptoms over time.

Among the HSCT group, the proportion of patients with disease progression was (roughly) 2% up to two years, 5% at three years, and 10% at 4 and 5 years. Meanwhile, the proportion of patients with no evidence of disease — defined as no progression, no relapses, and no new or enlarging lesions on MRI scans — was (nearly) 98% at one year, 93% at two years, 90% at three years, and 78% at four and five years.”

I am more determined than ever to get to Russia and have HSCT …it feels good to be part of this MS revolution.

————————————————————-

Since writing my previous post recording my current symptoms, I keep thinking of one’s I’ve left out. I’m going to add them to the list in italics.

GoFundMe

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

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.