Tysabri/Gilenya

[Scully]

Hello Chris,

 

Oh dear, poor you. I really hope you feel very much better soon. And I really hope it isn't another attack of shingles.

 

Scully

x

[Christina]

Hi again folks

 

Just a quick update regarding how I'm feeling post Tysabri no. 1. I definitely had an outbreak of shingles, which I knocked back quickly by taking acyclovir, but I felt poorly for quite a while and I think my MS is reacting too. I'm very likely relapsing, as all my old symptoms are back with a vengeance and my pain levels have shot through the roof and fatigue is immense.

 

Been having lots of discussion with my MS Nurse, who's liaising with my Neuro. The upshot is to hold off steroids if possible, as Tysabri plus steroids may just batter my immune system too much, and increase the chance of shingles returning with the potential for serious outcome (they're thinking brain encephalitis). The debate continues as to whether the shingles has been triggered by Tysabri or from coming off copaxone! Don't think I will ever know.

 

So the last couple of weeks haven't taken the path I'd hoped for, especially when compared to other folks' experiences on the forum. I'm due next infusion on 22 January, so I'm crossing fingers and toes I feel better soon and start to feel the benefits I'm told I will feel (most likely).

 

I think I may start a blog or another thread, so others can follow my Tysabri experiences.

 

Chris x

[Stumbler]

Chris,

 

I always adopt a philosophy of "tomorrow will be a better day".

 

So, good luck, I hope tomorrow is a better day for you too.

 

[Christina]

Thanks John.

 

[Scully]

Hello Chris,

 

So sorry you have been feeling down in the dumps with th dreaded shingles again. Poor you, I do hope you begin to feel better soon and the second Tysabri infusion begins to have positive effects for you.

 

We are all keeping our fingers crossed that you have some benefit form it real soon.

 

Scully

x

[Kins77]

The doc has decided that avonex isnt working for me so has suggested Gilenya! I think it's pretty new and they have just put the first 4 people on it in Leeds! Has anyone heard anything about this drug?

[Scully]

Hello Kins,

 

THis link may help you. http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/gilenya. It's from the MS society and it describes the drug in detail.

 

Hope this helps

 

Scully

X

[Hezza]

Chris. I'm so sorry to hear that you've had such a rough start with Tysabri. I hope that things start to improve now x

 

Hi Kins77. The MS Trust have some information on Gilenya too, I understand that it is also sometimes referred to as fingolimod. You can find it here: http://www.mstrust.org.uk/information/publications/factsheets/fingolimod.jsp

 

[mustard]

Hi Chris - sorry to hear you've been having such an awful time with the starting of tysabri. Here's hoping the shingles are at least unrelated to tysabri and that once they are sorted you see some improvement.

x

[Christina]

Thanks Mustard and Hezza.

 

I'm think it's likely shingles caused me to relapse or, that and the very long lasting Chest infection/Whooping cough I had just before starting also played its part. Next infusion on 22 January, and reading other Tysabri users posts on FB group, it would seem it may take a few infusions to notice any improvement.

 

Chris x

[mustard]

Yes I think it's usually after the third or fourth that an improvement is noticed. I'll keep my fingers crossed for you hun. xx

[shepp]

Hi going for a blood test tomorrow 16/01/13 for the jcv virus if all well should be on tysabri soon fingers crossed

Tony

[Scully]

Hello Tony,

 

Good luck with the blood test tomorrow. Hopefully you will be clear of the JC virus and can begin Tysabri

 

Scully

x

[Christina]

Fingers crossed for a negative result for you Tony. It's about 50/50 I believe. Even if it comes back positive there are many people who chose to take the risk, which is pretty small in the first 2 years of treatment, so you may think it's worth taking. There is a closed FB group called natalizumab users UK, which you might find useful if you haven't joined already.

[lee P]

Good luck with the JC virus test Tony, hopefully it will be negative for you. I'm having my 4th infusion tomorrow and i'm very glad I made the decision to go ahead with the treatment even though I tested positive for JC.

Tysabri has been good for me over the last 3 months, slowly at first but over the last few weeks I have seen a real and sustained improvement in my mobility. A lot of people say its around the 4/5th infusion that they start seeing a noticeable difference so my fingers are crossed.

There are 4 people in my infusion group, 2 of us tested positive in the test.

All 3 of the others could barely walk when they started treatment, one being bedridden. The lady who was bedridden now walks with a rollater after 10 infusions and the other two after 7 infusions now walk with a normal gait. When I started they were on infusion 4 and walking with a limp so thats encouraging to see.

Anyway best of luck with whatever you choose to do. I'll have to pop in to Penyrheol to say hello in person someday

[shepp]

Good luck with the JC virus test Tony, hopefully it will be negative for you. I'm having my 4th infusion tomorrow and i'm very glad I made the decision to go ahead with the treatment even though I tested positive for JC.

Tysabri has been good for me over the last 3 months, slowly at first but over the last few weeks I have seen a real and sustained improvement in my mobility. A lot of people say its around the 4/5th infusion that they start seeing a noticeable difference so my fingers are crossed.

There are 4 people in my infusion group, 2 of us tested positive in the test.

All 3 of the others could barely walk when they started treatment, one being bedridden. The lady who was bedridden now walks with a rollater after 10 infusions and the other two after 7 infusions now walk with a normal gait. When I started they were on infusion 4 and walking with a limp so thats encouraging to see.

Anyway best of luck with whatever you choose to do. I'll have to pop in to Penyrheol to say hello in person someday

Hi thanks, penyrheol is back after xmas/new year break dependant on weather 17/01/13 12:00til 2:pm

hi penyrheol canelled due to bad weather

Edited 16 Jan 2013, 7:06 pm by shepp

[shepp]

Fingers crossed for a negative result for you Tony. It's about 50/50 I believe. Even if it comes back positive there are many people who chose to take the risk, which is pretty small in the first 2 years of treatment, so you may think it's worth taking. There is a closed FB group called natalizumab users UK, which you might find useful if you haven't joined already.

Edited 16 Jan 2013, 10:05 am by shepp

[shepp]

Hi-ya went for blood test today screamed once did'nt cry went into Cardiff for icecream

[shepp]

Hi all just had ms nurse on phone jvc blood test back as negative hope to have first infusion in10 to 14 days

[Christina]

Great news Shepp!

[mustard]

That is good news Shepp.

How are you getting on with it now Chris?

 

I've obviously had to come off it due to pregnancy, saw consultant obstetrician yesterday who confirmed there is zero research in to Tysabri and pregnancy.

[Christina]

Infusion no 3, thanks for asking Mustard! No vast improvement or miracle cure as yet - but then I never expected it! Finding it takes a few days to recover from each infusion, and I get very tired and need to sleep for England. Have to see how things go over he next few months.

 

My nurse mentioned they think tysabri will eventually be able to continue throughout pregnancy - it seems to be heading that way, but I guess not in time for you.

 

Chris x

[shepp]

Hi all after a bit of delay i'm finaly going for my first infusion week Wednesday 10th april looking forward to it I think, but only time will tell hope I get some sort of improvement if not it stops the worsening of the condition coz it seems to be getting worse week by week but as I said only time will tell Tony

[Christina]

Good luck Tony, I'm sure it will all be straightforward.

 

Chris x

[Scully]

Sounds like a plan Tony,

 

Good luck with it, as Chris says, I'm sure it will all go like clockwork !

 

Scully

x