What does the future holds?

[Peter]

Hi I am a new member to the forum having stumbled across it when searching the Internet for further info on amyloid. Some what like Miriam mentioned in her post "forum feed back and suggestions" I tend to be one of those that lurk rather than contribute, but here goes.
My problems started in June 2012 with a fuzzy feeling in my legs, saw our GP and he thought it was inflammation of the nerve endings but was not, it was then suggested it could either be Polymyalgia or Polymyositis but following treatment with steroids they were also ruled out. then in late February 2013 I had a muscle biopsy from which the amyloid was found. Whilst all this was going on I was having various test and scans for what they thought was a heart murmur, which following the biopsy was also put down to the amyloid. I was then referred to the NAC, could I say at this point that the treatment I have received from our local hospital and the NAC has been fantastic and it makes you wonder why so many are so quick to knock the NHS.
The chemo treatment which I had for twelve months did the trick and brought the ratio between the kappa and lambda to within the acceptable levels and have stayed level now for the last year which is great.
The main problem I have had all along is the fuzzy feeling in the legs which has developed into muscle weakness making walking and in particular climbing stairs very difficult, which for someone who prior to the summer of 2012 was playing golf 3 times a week and walking the family dog every day and now not because of the heart being effected but the muscle weakness is no longer able to do this.
Most of the posts I have seen refer to the heart,liver and kidneys being affected and none relating to muscle weakness, so if anyone has suffered in this way "what does the future hold" from your experience have you found that the amyloid will disperse and some of your strength return?

Peter

[patpinchin]

Hi Peter,

Thank-you for your post. Very interesting and it's good to know your diagnosis and NAC referral were speedy.
I am sure Miriam will correct me if I am wrong. Amyloid in the muscles may be like amyloid in the nerves which in my case gives me a relentless incapacitating form of neuropathy in the mouth where I am affected. A Consultant at the NAC told me in 2005 that even with a good/very good/complete haematological response, amyloid in the soft tissue "rarely changes over time". This is my experience as I had a VGPR to chemo in 2009/10. My FLCs have remained just inside normal for 18 months. The only treatment which I think could potentially help is the new anti-SAP antibody drug which promises to destroy deposits in tissues and organs. After 13 tears of chronic suffering I am desperate for it.

[georgeturner]

Hi Peter,

Good to see a new contributor. As more of us contribute, the more members will get involved and be able to support and help each other learn about amyloidosis.

There are several people, myself included, who have problems with their legs much as you have described. There are several topics discussing this e.g. Neuropathy and Dry Mouth.

As for your question, I wish I knew the answer. There is a new drug, the Anti-SAP Antibody drug, which is on clinical trial at the moment. See the link to a presentation on it in Pat's post in the Dry Mouth topic. It's looking promising so far, but it's a long process to get it approved. However, hopefully it will provide us with the answer.

[Miriam Vered]

Hi Peter,
Welcome to the forum.
There are many possible causes of general muscle weakness. Amyloid deposits actually in the muscles are rare but can happen. The fact that your amyloidosis was diagnosed from a muscle biopsy does not necessarily mean that you had clinically significant amyloid deposits in your muscles. Other causes of muscle weakness, such as neuropathy, or the general effects of illness and/or drug side effects are more common.
 It's very individual, and you should discuss your symptoms with the doctors treating your amyloidosis - your local doctors and those at the NAC.


 

[Peter]

Hi
Thank you all for your replies, I do get a bit of a dry mouth but nothing too serious and it looks from what is being said that it seems to be a neuropathy problem. I am Miriam due to see my local consultant in the next couple of weeks and back up to the NAC in early May and I will discuss the symptoms further with them.
I heard about the trials of the new drug when I was last at the NAC in November and asked if I could be included but was told that if your heart was effected then you couldn't be part of the trial.
I suppose as with any illness we are looking for the miracle drug and with amyloidosis sufferers it can be no different, let's hope that something positive comes from the trials for all of us
Peter

[Lesley]

Morning All

Peter, I went to my Dr with 'weakness' in my legs on climbing stairs. I was never to think that the prognosis would be something so sinister as I thought I would be dismissed with the fact 'I was getting older'
Since chemo and SCT I have to say the one thing that hasn't improved is my legs. They are still weak climbing stairs, I can fall at a whim, tripping over my own shadow. By the afternoon I describe my legs as 'the wooden tops' or as I have rather a macabre sense of humour - I say rigor mortis is setting in! They are also affected by neuropathy. I only (latter part of last year) realised I had Amy in my bones & spine (along with liver,kidney, spleen, touch in heart).

Glad you've posted rather than lurked - great to get to know everyone. We really do seem to help each other.

Lesley

[Elliei21@me.com]

Hi all,
I would like to say I also have weakness in the legs and swelling too of the legs, the neuropathy
In my legs is there too but I can cope with it which is a blessing I guess!!!. I struggle to climb stairs and any going up any incline at all I become dizzy and breathless so have to admit if a lift is available I will always use the lift. I have just passed my fourth week of CVD treatment at the moment and up until now have had very few side effects but now have a lot of swelling which is uncomfortable all over my body, I am seeing the consultant on Wednesday and hoping for some positive results. The new medical research drug sounds very interesting, let's all hope it will be developed soon to help,each one of us .
Ellie

[Lesley]

HI Ellie

Its funny (well not really!) how you almost acclimatise yourself to your own stairs. I do develop a wonderful crab like walk going up sometimes - something I cant do at work but I relent and put my handbag/bags in the lift - its bad enough climbing up with my own bodyweight (all 9 stone of me!).
The neuropathy today is killing me. My body does tend to scream at me around 2 pm. My dry mouth is driving me nuts - how do you explain to someone it really is like having blotting paper in your mouth and drinking copious amounts of liquid, whilst sates the situation for a nanosecond, doesn't actually solve the problem!
I was on CVD Ellie - its a more 'kinder' chemo treatment I believe. I'm not sure if you work? It does tire you though and I so wish, looking back, that I had listened to my body more! I used to walk in from work, climb up the stairs and climb into bed, still with my coat and gloves on!

Keep us posted on how you are doing and if you want any support, verbal or rant, I'm happy to listen (and moan with you!)

Lesley

[alisonjayne]

Hello,
My husband David developed swelling in his feet which spread into his legs and groin over the next 4 months. It was the muscle weakness that got him down. Very hard to use the stairs and an ordeal to get in and out of the bath. We had an ingenious method using my feet as something for him to push against whilst he managed to get his 6 ft plus frame up using my arms as extra support. Huge effort but absolutely worth it for the relief a hot bath gave his muscles. I was told it was due to neuropathy. The weight and maybe pressure of the oedema added to the weakness I think. It gave him shooting pains in the muscles. Absolutely horrible and I hope with all my fingers crossed that there will be a deposit busting drug available soon.

David had amyloid in heart too and very low blood pressure - perhaps that would add to weakness?
Ali

[Elliei21@me.com]

Hi Lesley,
Thanks for your supportive message, yes I don think we will ever regain our strength to go up stairs the way I used to run up them years ago. I feel a lot older than I am when I'm going up any stairs!!!!!
I have my second cycle of CVD starting next week , the consultant told me its a more Tolerable treatment and I seem to be coping very well , my friend came to see me today and actually said to me she could not believe I'm having any treatment because I'm looking well, hopefully will continue the second cycle so well. I have not worked for 5 years now, my job was a physical one and unfortunately have not regained my strength to stand up,for too many hours without feeling dizzy and tired. I have taken to enhancing my passion for baking and making novelty cakes to occupy myself which I thoroughly enjoy and have made 2 birthday cakes this week, it's good because I sit down to decorate them any help or support I can give to you please ask too I find the forum a great support.
Take care ellie

[Lesley]

Morning All

HI Ellie - A lady I had SCT with at the same time, her FLC's rose and she is now back on Chemo. She tolerated the CVD immensely well and I think I am right in saying she was in her early 70's. In fact must text to see how she is. I think if I had been off work I would have tolerated this more and been able to rest more. And maybe I wouldn't have suffered with Oedema quite so badly in my legs.

Hi Ali - I cant tell you how much relief I got from putting my broken body into a bath after SCT. It was bliss, however, like your poor husband, I too struggled to get in and out of the bath. I used to lay a towel on the floor for when I got out and I had to lie on the floor for half an hour just to gain enough strength to pull myself up to sit on the loo and slowly get dressed. But it was all worth it. It was the only thing that gave me any relief from the achy bones. I used to suffer dreadful dizzy spells whilst on the chemo and I would get so dreadfully out of breath but maybe that was the fact I have a touch of Amy in the heart. You sound as if you were wonderfully supportive though Ali.

Ellie its great that you have found another pleasure in life - I am sure your cakes are legendary - its amazing what they can make nowadays - trouble is it seems such a shame to actually eat them!

Great to 'chat' to you all - its great to read the posts.

Lesley
x

[Elliei21@me.com]

Hi Lesley,
I think we all have similar symptoms the dizzyness and the breathlessness too,, I just stick to a
Shower, I haven't the strength either in my legs to pull myself up out of the bath. I think we have learnt to adjust our lives to living as Amyloidosis sufferers definitely.
Yes I'm very lucky to be tolerating CVD very well and you are completely right I'm resting. A lot at home which is a great advantage I'm sure, I have the leg oedema and especially my feet, but once they are elevated it improves, I also wear compression stockings on a daily basis which I find helps a lot and keeps them from aching too. you just learn to live life with the daily aches and pains I think.
Ellie

[alisonjayne]

Ellie -your passion for cake making made me smile. My husband was off work for a year trying to return but it was too exhausting and driving became an issue. Apart from following his passion of long distance walking via walkers blogs, he turned his mind to bread making and became very proficient at it. I miss that lovely hot bread smell wafting through the house. My daughters tell me I have to practice the skill. I have made a large bread basket out of hedgerow stuff ready to receive home made bread rolls in memory of Davids fantastic therapeutic hobby at a celebration picnic for his life in June, so I had better get kneading.

I think home baking is a great focus and as you say it can be done sitting, with breaks. It was the steroids that started David's passion for it as he was  always hungry! Bake on and enjoy the pleasure and diversion it gives.

Lesley - the baths were hard but even harder for you as you are on your own.  You do so well.
Alix

[Elliei21@me.com]

Hi alyson
Yes I agree totally baking is definitely therapeutic and takes my mind too off what I have to deal with caused by the amyloidosis. Ah yes it's so funny you should say about the bread as that's what I do too bread making every three days so I always have fresh bread, unfortunately at the moment, I am losing my taste for bread due to the side effects from the chemo and I can not enjoy my toast will email marmalade hopefully soon I will be able too again, you are right, you find alternative things in life that you never had time for before and I can only say I wish I was closer to where you live and I would definitely be baking you some treats for the celebration of David's Life, what a lovely idea, hope you and the girls are well too. I just embark on my second cycle of velcade this week and are trying to spend as much time as possible away from public places to avoid any infections or anything that is going to interfere with my treatment and hoping I can to,erase the next month as well as the last, I have to thankful really .
Regards elliex

[alisonjayne]

Ellie
David left me with a big shiny ken wood chef which ruled his life last year. It will be churning out cakes for his celebration from Easter on. I am better at cake than bread! Ali