Update on pwc51

[pwc51]

All,
I feel the time is right for an update!
Those who have seen my prior postings will know some of the early detail but a summary here may be useful.
I was first diagnosed in July 2009 after a fairly short spell of trying to fix a sinus problem. At the time of diagnosis I had sinus problem, considerable loss of hearing in both ears, shortness of breath when climbing a single flight of stairs, severe joint pain and kidney involvement. An initial 5 month period of Cyclophosphamide (starting at 2 week intervals and extending to 4) pushed it into ‘remission’ which was maintained with methotrexate (tablets) until October 2010.
During this period the sinus problem was reduced to minimal inconvenience (not worthy of any further action, hearing restored 100%, breathing problems were cured, kidney function returned to very bottom of ‘normal’ spectrum. No joint pain was experienced but, early on, the vascultic rash was evident, although this stopped after a while.
In October 2010 I began suffering from the severe joint pain again. Blood tests showed the high inflammatory markers so we stopped the methotrexate and began another course of Cyclophosphamide. This has varied between 2 and 3 week intervals and combined with high steroid infusions. Whilst there has been some improvement the inflammatory markers have steadfastly refused to come down to the normal levels this time. Whilst the initial joint pain disappeared early in this course of treatment it began coming back again in the past 2 or 3 weeks. This was combined with considerable vasculitic rash on feet, ankles and lower leg – an indication of disease activity.
On the whole my health has been good but the ‘new normal’ means considerably less activity than I was used to before and long periods of rest. I continue to work fulltime although travel recently has been stopped as it was strongly advised against whilst undergoing the Cyclophosphamide infusions.
Bottom line is that we are stopping the Cyclophosphamide and switching to Rituximab infusions (2 – 2 weeks apart), starting next week. This will be ‘supported’ by 15mg methotrexate injections. For those in the UK, owing to the cost of Rituximab my consultant had to apply to NICE for this to be approved. This was granted in short order last week.
Looking forward to Rituximab pushing the WG to remission! I will keep you posted on developments.

[BrianR]

Wishing you the very best for a successful RTX treatment Peter. Marta is waiting for the same and we are hopeful for news soon that our "system" will pay for it and she will get the call. Let's compare notes!

[Sangye]

I hope the rtx works great for you, and I'm happy to see you're still able to work and function well despite all you've been through. :smile1:

At my next visit with Dr Seo I'm going to ask why they use mtx in addition to rtx for some people.

[Hammy8241]

[QUOTE=pwc51;35072. For those in the UK, owing to the cost of Rituximab my consultant had to apply to NICE for this to be approved. This was granted in short order last week.[/FONT][/SIZE]

Thats good news. Nice to know that the system works and our taxes are going to pay for something that benefits someone nice!!

[pwc51]

Thank you for your comments.

For Sangye - my consultant is indicating that mtx is the approved treatment with rtx rather than some of the other options (I am guessing some just have rtx with no ongoing 'maintenance' addition?). I am still on the pred too - currently 15mg per day.

[Sangye]

I'm not on any other immunosuppressants between rtx treatments. Dr Seo has never mentioned using anything, but next time I see him I'll ask what the criteria are for using one with rtx.

[Geoff]

Good to hear your update Peter. Keep us posted as to your ongoing treatment and I hope it does the trick for you!!

[BrianR]

I'm not on any other immunosuppressants between rtx treatments. Dr Seo has never mentioned using anything, but next time I see him I'll ask what the criteria are for using one with rtx.

Sangye - I am interested in this as well given that Marta will soon be starting her RTX treatment. When do you see Dr. Seo next?

[Sangye]

I see him on March 16. I'm already writing down questions, so let me know if you have any. As it gets closer, I'll return to the thread I started before my last visit, where I asked everybody to list questions.

[Daggar]

Has rituximab become the drug of choice for flare ups and/or those who don't go into remission on the cyclo?

Are the side effects similar to cyclo?

[BrianR]

I see him on March 16. I'm already writing down questions, so let me know if you have any. As it gets closer, I'll return to the thread I started before my last visit, where I asked everybody to list questions.
Thanks Sangye.

I really hope the RTX kicks it for you this time around and you acheive remission. I read most every post from everyone on this forum every day. My thoughts are with each and every one of you and my sincere wish is that treatments will evolve and improve and that everyone suffering with WG will get into remission someday and stay there. It is very difficult somedays watching and hearing about the suffering and stuggles evryone has to put up with and not being able to do anything for anyone.

[pwc51]

Has rituximab become the drug of choice for flare ups and/or those who don't go into remission on the cyclo?


In my case we are moving to RTX as it won't go into remission with Cyclo - even though this was when treating a flare, I guess the same would have applied had this happened during teh original treatment. As it is an expensive option it will generally be second choice. However, for young ladies I gather RTX is the treatment of choice as it does not affect fertility.

[pwc51]

Well round one of RTX went without a hitch on Wednesday. No adverse reaction so far. Still lots of rash in lower legs and some joint pain occasionally, but I gather it can take some time to take effect.

Round 2 is in a couple of weeks, I hope it continues that way!

[Sangye]

That's great! Rtx kicks in about 6 weeks after the first infusion. You might start to feel some relief sooner though. Hope it keeps going well. :smile1:

[BrianR]

Great to hear pwc51! Marta's fisrt infusion is scheduled for March 10 however, last night she became really sick with a stomach bug and has been vomiting and generally feeling like death warmed over. It figures this would have to happen 5 days before her infusion! She has not caught any bugs since diagnosis in May 2010 and now she gets sick at the worst possible time. Hopefully she fights it off over the next few days otherise they will re-schedule her for the end of March.

[Daggar]

Sorry to hear that Brian,

Give Marta our best -- Holly and I.

[Sangye]

Brian, so sorry to hear that! I'm sure Marta will get over it in time. Lots of fluids, electrolytes, and a spoonful of plain yogurt every couple hours.... Big hugs to her! :hug2:

[DEE]

Hope Marta feels better soon :hug1::hug2::hug3: DEEx

[BrianR]

Thanks you guys/gals. I will pass it on to her once she gets out of bed (no sleep last night), I am just feeling a little "ripped off" and disappointed that's all. Sangye, we will of course consult with the nurse who will be doing the infusion (her Dr is away on holdays right now) but do you think she is OK to go ahead with the infusion if her symptoms have subsided by infusion date or do they generally want people to wait for a period of time after being sick to be certain there are no lingering symptoms or bacteria? Kind of a dumb question I know but I've never been one afraid to ask them! So far it just looks lke a stomach bug as she has no sore throat or chest and it is going around our town right now. Hana had it a couple of days ago and she seems fine now so hopefully this will pass quickly for Marta.

Thanks!!

[pwc51]

Brian - please wish Marta a speedy recovery. Hopefully she'll still be good to go on the 10th. It will be good to compare notes once she is underway, albeit with the differences in the way this disease works we'll probably not be able to read too much into them!

[Sangye]

Brian, I think it depends on what type of infection. A stomach bug usually only lasts a day or two, so it's less likely to be a problem. If she's not all better by Monday give your doc a call and ask about it.

[BrianR]

Thanks and we will do exactly that.

[drz]

Well round one of RTX went without a hitch on Wednesday. No adverse reaction so far. Still lots of rash in lower legs and some joint pain occasionally, but I gather it can take some time to take effect.

Round 2 is in a couple of weeks, I hope it continues that way!

Glad it went well for you. It shouldn't be much different next time. Big problems often show up the first time. Hope your labs show improvement soon.

[elephant]

I'm sorry to hear that Marta is ill, yes make sure she is well hydrated. That is the worst kind of flu to get.

[marta]

Ta daaaaa!!!! I'm baa-aaack.

Peter, this is so good to hear. I'm a little nervous - don't know why, maybe only because I have extra time to think about it. The good thing about just landing in the hospital (and last minute vacation deals) is that you are happy with what you get because you don't have any time to think about it beforehand. I hope that I too can report no adverse side effects. Looking forward to comparing notes and shredding up the trails this summer on my mountain bike.

Thanks everyone for the nice wishes. That was a fast and furious stomach bug, Hana had it on Wednesday, I got it on Friday and Brian is in bed right this minute after having an intimate affair with the toilet all night and most of the day today. Two day gestation period, about 24 hours of feeling like you have been invaded by an alien who is fighting for his life to get out of your body, then all seems to subside. All I can say is that our four year old is waaaay tougher than both of us put together.

Thanks y'all. You're truly the best.

[Sangye]

So happy to hear you've recovered, Marta. Give Brian a big hug-- if you can get near enough!

[Daggar]

Marta, does that mean you've become the "caregiver"?? Maybe we can allow you to become a "member" of our "caregiver thread"!! :thumbsup:

[marta]

Marta, does that mean you've become the "caregiver"?? Maybe we can allow you to become a "member" of our "caregiver thread"!! :thumbsup:

I think you caregivers have a much harder job than those of us being cared for. It would be an honour to be 'member' of your elite club. Without you guys, us guys would have a much harder time 'being here' if you know what I mean.

[pberggren1]

Ditto to what Marta said. I would be totally lost without my parents. I cannot hear or drive anymore so I rely on them quite a bit.

[pwc51]

Well .... 2 Rituximab infusions + methatrexate injections have in 3 weeks brought my blood readings down to 'remission levels' (my consultants words) where 5 months of Cyclophosphamide falied! I actually feel so much better too with little sign of the vasculitis rash and other symptoms. Long may this continue ... so I can start reducing the pred etc.

The downside is I think I am more suceptible to infection having picked up an awful sickness virus - although I think I am almost through that now. Probably my own fault for travelling by air to Norway for a few days business - thinking a short flight would not present the same problems as a longer one but there was a very sick peron on the seat me!!! Currently stuck in a hotel in Norway waiting for the next available flight home as the sickness forced me to miss my original schedule - but there are worse places to be (I love the sea, fjords, snowy mountains etc)!

[Sangye]

Glad to hear the Wegs dog is sleeping! Yay for rtx! Hope the bug you contracted decides to go explore the fjords instead of using you as lodging.

[pwc51]

Thank you Sangye - I thought is was good to have something positive to report on rtx as I am conscious it is not good for all. For those struggling on other treatments, as I was, it looks like a positive alternative, providing funding can be found! In my case, good ol' NHS (UK).

The bug has just about been left behind and my appetite is slowly returning - was repatriated to the UK late last night!

[Sangye]

LOL Glad they let you back in, especially since you've become an expensive citizen. :wink1:

[pwc51]

Had not thought of that - my street value has gone up! My daughters will tell that my street cred has not!

[Daggar]

Funny how that works.... my daughters used to think I was "main street" ... now it's more like "cul-de-sac"!:w00t:

Good to hear rtx continues to do the job - definitely encouraging to have "alternatives" if something fails to work....

[pwc51]

Time for an update ..... 5 months from RTX.

Saw my Rheumy yesterday and his first words were 'do you feel as good as your blood tests (suggest)'! Seems good news so far. I have been on 12.5Mg Pred for the past 3 months when he stopped me reducing as the bloods were heading the wrong way. However now we are stable we are starting again - over about 9 weeks we'll get to 7.5 Mg and hold it there.

He indicated that should we need to repeat the rtx we would use the 4 infusion 'method' rather than the 2 we did the first time round. Planning ahead and preparing me!

Not much else to report other than keep taking the tablets and having the blood tests!

[BrianR]

Great news!!!

[pwc51]

Yes- I am pleased - would be even happier if I could get off the MTX but that seems some way off yet!

[Chris G]

I'm happy that you're doing so well after rtx! I too am at 12.5mg pred currently. My rtx treatment was in May. I have just stopped taking mtx because of the side effects (and it was obviously not doing its job prior to rtx infusions anyhow).

My docs plan to repeat rtx automatically, 6 months after my first treatment. It's strange how the protocols are so different from doctor to doctor. But I suppose our cases are individual as well.

Continued good luck on your taper!!!

[Sangye]

I'm glad you're doing so well, pwc!

[pwc51]

Latest news:-

1. Have just had my second cataract treated - I can see again! My last glasses were -11 and really needed to be -15 so I could hardly focus on anything! Now I don't need glasses for most distance work, and just need some correction for close work / reading. It is amazing - a new world, driving is so much easier!

2, Everything else is pretty good - currently PRED is alternating 10mg / 7.5Mg, for the next 2 weeks, then it will be 7.5Mg until December. More bloods this coming week to confirm status / progress.

[elephant]

I have cataract removed on both eyes and love it! No glasses just reading glasses! Glad all went well. Need to get another avatar picture without you glasses!:)

[Psyborg]

Sounds like things are going well for you. Great news...and good luck with getting off the Pred :)

[crackers]

i had cataracts removed last year and had worn glasses for 50 years.it was amazing to be able to see clearly without them.enjoy the freedom.

[maria garcia]

Hi brian I started to read your post from the Beginning when you started on RTX. Did you go into remission with the RTX?

[pwc51]

I am in medication maintained remission following the RTX, something we could not achieve after flare with Cyclophosphamide.

[DEE]

i had cataracts removed last year and had worn glasses for 50 years.it was amazing to be able to see clearly without them.enjoy the freedom.
I had both mine done this year too and have worn glasses for 50 yrs . I cant get over how bright colours are now !!

[mishb]

Wow, no glasses ---that's excellent news

Your avatar is amazing.

[elephant]

You look great without your glasses!

[pberggren1]

This is good news for sure!!!!!

[drz]

I had both mine done this year too and have worn glasses for 50 yrs . I cant get over how bright colours are now !!

I really like reading the comments about successful cataract surgery. I am scheduled to have it done in two weeks. I also opted for for the single focal ones so I will need the reading glasses but having worn glasses for almost my whole life i can't imagine being without them. I am looking forward to better vision. Can you see computer screen without glasses?

[DEE]

I have to sit back from the laptop without glasses,but just uses glasses normally . It is strange without glasses ,sometimes when were on the way out I feel as though I have forgotten something .:unsure:

[pwc51]

Had a call from my Rheumy yesterday following a blood test. I was a little concerned as, of late, he has not usually called unless there is a problem. He said he hoped I felt as well as my blood results as they are fantastic! Unusual words from a consultant - he sounded quite excited. The markers are the best readings I have had since being diagnosed 2.5 years ago. Long may this continue.

[mishb]

That's excellent new. :thumbsup:
You must be doing something right so keep up the great work ......... but don't you just hate it when they scare the crap out of you, just to give you great news.

I hope you continue to stay good

[renidrag]

Great news, congratulations on the bloods.
Dale

[Fran]

That is excellent news Peter !! :thumbsup::thumbsup:

Best wishes,

Fran

[Dirty Don]

Congrats pwc...you give us all something concrete to aspire to...best of luck!!!

[Dryhill]

Great news Peter, this really cheered me up as I am waiting NICE approval for RTX as well. Glad to hear Dr. M was happy as well, I am seeing him later thsi month.

Jim

[Al]

Good, Peter. We like success!

Al

[KathyB]

What great news, Peter! Thanks for sharing -- keeps the hope alive!!

KB

[marta]

Peter, woo hooo! I'm so thrilled to hear this. You've been working so hard to get here, so enjoy it all and forward momentum.

[Sangye]

That's awesome, Peter!! :thumbsup:

[pberggren1]

I hope you feel as good as your blood results as well. Hopefully this is new trend for you Peter.

[pwc51]

More good news! (I hope I am not tempting fate by writing this!)

I saw my Rheumy today - now 18 months since RTX treatment. Bloods etc are still good. He thinks teh effect of RTX have probably worn off now and that we have it in an almost dormant state (sometimes I am not quite as convinced as he is but I can't argue against the months of stability!) We are planning to reduce pred from 5mg to 2.5 over the next 6 weeks or so. MTX (15mg injection) will remain the same for now. Long may the trend continue!

[Dirty Don]

Congrats! WooHoo! And all that goes with that! What a great place to be! Nice to hear some good news for fellow Weggies!

[KathyB]

Sounds wonderful, pwc51! Why did you decide to stop the Rtx 15 months ago? Blood test results? I'm wondering because my doc is questioning whether I should go another round (low immunoglobulin levels he thinks are related to effects of Rtx) in September. I've gone two rounds six months apart since last September when I was diagnosed. I'm still on 5 mg prednisone but no other maintenance meds.

Here's another woohooo to add to your collection!! :w00t:

KB

[pberggren1]

More good news! (I hope I am not tempting fate by writing this!)

I saw my Rheumy today - now 18 months since RTX treatment. Bloods etc are still good. He thinks teh effect of RTX have probably worn off now and that we have it in an almost dormant state (sometimes I am not quite as convinced as he is but I can't argue against the months of stability!) We are planning to reduce pred from 5mg to 2.5 over the next 6 weeks or so. MTX (15mg injection) will remain the same for now. Long may the trend continue!

If it were me I would not want to go any faster than 1mg per month on the pred taper.

[HopeinTN]

Good deal and keep up the good work!

[Debbie C]

It's great to hear that are still doing so well Pete...How often do u get the MTX injections? I tried the pill and like all the other meds,just couldn't do it...really messed up my stomach but I heard the injections are alot easier on you. Hope it all keeps working for you :thumbsup:

[drz]

If it were me I would not want to go any faster than 1mg per month on the pred taper.

Peter, glad to hear the good news. How are you feeling now? How do you feel about trying to go drug free?

I agree with a slow taper. I have been considered in drug induced remission for 15 months and am also on 5 mg pred and azathioprine for maintenance. If this continues for another 3 months the doctors will consider a further taper but don't exactly what they will recommend, but expect it will be rather slow for both. I also agree with anxiety of reporting any good news for fear of waking or teasing the sleeping Weg dog into doing something bad. I only had a couple RTX IV at beginning of treatment over two years ago but did do 8 months of CTX before going on the azathioprine (generic Imuran). Getting drug free is everyone's dream I think but I also feel considerable anxiety about having a big flare once the tapers to try get off start. I wonder how many people need to remain on some drugs for very long term and how many are able to remain in a remission without any helping drugs? I am thinking Al might have known the answer to this question. Miss him.