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#1 uknlv18

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Posted 11 June 2012 - 11:43 AM

Hi all,

Well I am back again, have been in and out of hospital again. One of my necrotic toes got infected very badly and I ended up in hospital for 14 days getting IV antibiotics and strong oral antibiotics. At the end of it all the antibiotics made me quite sick, had severe stomach pain and they ran a bunch of tests to see if I had had a heart attack. This all happened Sunday night and Monday morning, they gave me some IV anti sickness medicine and it cleared up the stomach upset and pain. And a bit of peppermint water. Old remedy but it really helped a lot! Well I was home a grand total of half an hour when the doctor on the ward called to tell me that one of my blood tests came back positive for a heart attack. Was a bit shocked to say the least! Down to A&E, evaluated and nothing showed any signs of a heart attack but they admitted me anyways. More tests later and they are still not positive it was a heart attack or something caused by my MCTD. What they say I have now instead of just Scleroderma.

I'm due to have an angiogram on the 20th of this month, and a bit scared at the moment. I hope it doesn't hurt too much and everything checks out okay. I had debated on not having it as two of the Cardiologist said it wasn't a heart attack and they were fairly positive it was caused by the MCTD, but I figured I need to know for sure. So I will soldier on with another test. They noticed a thickening in my colon when I had a MRA (magnetic resonance angiogram) in March so had to go through a Colonoscopy while inpatient, and let me tell you that was no fun. Bad enough to have to sit on the loo non stop for hours at home, but when you have one toilet and 6 people it is really difficult. It all came back negative, so no problems there anymore.

Whilst inpatient this time they have told me that they want to give me Rituximab, I don't know much about the drug other than what they tell me and what I have read about it. Have any of you taken it and if so have you taken it for awhile and does it help? And also have there been any long term side effects from it? The doctors of course tell me it is a wonder drug and I would be mad not to have the treatment. But I don't always trust them and have seen in the past where medications were said to be fantastic, only to have bad side affects over long term use. So any help from you all would be greatly appreciated.

To be honest if it would at least lesson my symptoms and let me have some of my life back it would be worth it. My quality of life has gone in the toilet, I can't get out of the house at all unless in my wheel chair and I get so tired I can make about three hours of awake time and then have to sleep. And when I am awake I am so dizzy I can hardly do anything. I have told my doctors about it and they just say it is the medication and I need to persevere! It is incredibly frustrating at the moment. And if we could just have a bit of warm weather so I could go outside would be wonderful. That little bit we did have here I couldn't go out of the hospital room and could only look out through the window at it.

Well thanks in advance for any help with the Rituximab and hope you all are keeping warm!

Cheers
Jean

#2 Jeannie McClelland

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Posted 11 June 2012 - 01:02 PM

Hi Jean,

My goodness, sounds like you have been having loads of not-fun. How is your toe after all that?

I haven't taken Rituximab myself, but I have a couple of friends on it and they say it has helped them a great deal. I'd post a link for you, but I have a new laptop and haven't figured out how to get more than one tab opened for the internet (my learning curve for new technology is real bad!). Anyhow, like all powerful medications, it has some side effects and I believe your doctor will want regular blood draws to check your liver function, etc. It's the old question of risk:benefit. How much do you want what the medication can help with? Another thing to consider is that when reading about side effects, you aren't getting the true percentage of *your* risk, just the percentage of a given population that experienced a side effect. And, with newer medications, they haven't be on the market long enough to really know what the long term risks are. It doesn't do to scare yourself out of taking a potentially very helpful medication just because you might be one of the unlucky few to experience a side effect. Don't buy trouble by worrying, we get given enough as it is!

I was talking to a friend in the UK over the weekend and she was bundled up in a fleece jacket - inside! Here in the Rockies we have been getting a lot of sun (not unusual) and the odd hot day, but boy, are the nights still cold! Here's hoping for some warmer days for everyone.


Jeannie McClelland
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#3 Joelf

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Posted 11 June 2012 - 01:18 PM

Hi Jean,

It's great to hear from you again, although it doesn't sound as if you've been having a very easy time of it! I'm sorry you've been having problems with your heart; it must have been very scary and I hope that having the angiogram on the 20th will give you some answers and will be able to reassure you.

As regards Rituximab I've no experience of it but one of our members (Sooty30's) husband is taking it at the moment.

You're certainly right about the weather in the UK at the moment!! Cold, rain, rain and more rain!! When we recently had a brief respite with some half decent sunshine, I heard that we needed rain until the December holiday to fill all our reservoirs!! I think we should be careful what we wish for!!! ;)

Fantastic to see you posting again, Jeannie....welcome back!!! :emoticons-yes:

Best wishes,

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#4 Amanda Thorpe

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Posted 12 June 2012 - 04:13 PM

Hello Jean

An angiogram is similar to a catheter test so those of us who have had a left/right heart catheter test have had a similar experience and I'm one of them. Basically an incision is made in the femoral artery near the groin and the guide wires are passed up it into the heart, a contrast dye can be injected and the heart looked at. You have to shave your pubic area so do as I did and maybe get it waxed prior to the procedure. Apart from a local anesthetic injection into the groin area you don't feel much other than the wires being pushed around but it's not painful.

Afterwards you can't sit up for a number of hours as you could bleed out, then you can sit for a few hours then eventually stand. You have to fast prior to the procedure but they supply food for afterwards. I will be having another catheter test next year or so.

Go for the rituximab, my dear friend had it and it helped her and she had to fight to get it paid for.

Quality of life is shifting sand, I use a wheelchair outdoors because of pain first fatigue second. Fatigue causes me to sleep more of the day than I am awake so I have to alter my perception of what is a good day everyday, like I said it's shifting sand. Pain is the bane of my life followed by fatigue but somewhere in there I have to find a life worth living and I do just about.

Take care.
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#5 uknlv18

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Posted 13 June 2012 - 06:29 AM

Thanks for all the replies, I am still scared of the Angiogram but I am dealing with it better now. I really want to know what's up and to be sure my ticker is going to keep on ticking. I can live without a lot of things but a heart is not one of them hehe. I had a Cardiac Nurse around on Monday and she went over everything with me and what to expect. So although I am still scared I figure it isn't any worse than some of the other tests I have gone through. And hopefully all will come back negative and I can cut back on some of the heart medications as I think they are causing the dizzy spells.

Thanks for the support everyone and I agree Amanda; it is shifting sand. It has been one thing after the other with me lately and it seems when one pain or problem is resolved then another crops up. On the plus side they say my toes are healing nicely and I am only going to lose a portion of my second toe, about to the bottom of the nail, and a little on the back of the third toe. But keeping the toe nail. No more pretty nails in sandals. but with the Raynaud's sandels were rarely an option anyways :lol:

I have been having up and down moments lately; for some reason I have been able to deal with everything that has happened fairly well except the heart thing. It has thrown me for a loop. My biggest fear is that I will be unable to fly anymore due to all these new issues and not be able to get back to the States to see my family. But I have found a driving route, I have to go to Russia and drive across Syberia and take a ferry across to Nova Scotia and then down through Canada and then to America. Piece of cake!! :lol:

I will consider the Rituximab once everything settles down a bit. I am hoping for at least a month of no new crisis'. I forgot to post a picture of my toes from the last time I posted. I will see if I can upload them now.

Here's hoping for some warm weather, still cold here and wet.

Cheers
Jean

#6 uknlv18

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Posted 13 June 2012 - 11:40 AM

Just wanted to say I posted pictures of my toes, they are a bit better than this at the moment. But this is what they started like! It is in photos under the album spetakeran? :lol:



#7 Amanda Thorpe

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Posted 14 June 2012 - 02:55 PM

WOW! Jean, them's some ugly looking toes and it would almost be funny if not for the fact that they must be sooooo painful. Thank you for posting the pictures, it really does help other people with the same issues feel less alone when they see someone else with the same problem. It also helps people to see something quite gruesome and know that it can still be lived with. Make sense? What I am trying to say is that it can actually encourage people.

Take care.
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