Vanessa

Members
  • Content count

    94
  • Joined

  • Last visited

Everything posted by Vanessa

  1. A couple of nights this week I have woken with a completely dry throat. I am not sure what the name is but the bit that dangles between the tonsils completely dried out and even after drinking lots of water still feels uncomfortable. The first time it happened I had eaten a very strongly flavoured curry and the next time it was after going for a meal where I had more than 1 or 2 glasses of wine! Other than the obvious of cutting out alcohol and sticking to more bland food has anyone else experienced this and have a solution?
  2. I have had real bra problems ever since my scleroderma started 4 years ago. I found it most comfortable to just go bra less at home. Of course this meant that trampolining was out of the question. These days I need to wear a mastectomy bra which I have found most manageable by going up a couple of sizes and reducing the cup size. Often I also add a bra extender into the equation. However, when at home I usually revert to no bra at all. Glorying in my unitit status.
  3. Thank you girls. This scleroderma rotter puts us to the test that's for sure.
  4. Hi Sandy I am so pleased that you were able to make the BBQ and that you received the DLA You are an inspiration. Sending you a hug. Vanessa
  5. Hi Sandy, I have just popped by after a very long absence and wanted to say I'm sorry that you have had such a lot of challenging stuff going on though I am totally in awe of your wonderful way of dealing with everything. About the hair. It's a real bummer. I had chemo last year and had a similar follicular challenge. I was given a wig but have to say it was a waste as I only wore it once and even though it was a discreet looking one I felt very conspicuous. And it was ITCHY. A lovely soft t.shirts material thing called a durag was much easier to get along with. I hope you make it to the barbeque at the weekend. Take it gently.
  6. For months now my skin has been thickening (I have now reached the point where I feel as though my arms are going to split like a sausage) and been extremely inflamed and painful. A month ago I started on Plaquenil and prednisolone. It has helped a bit with the inflammation but on reading various items on the Internet, Plaquenil seems to be for joint pain and inflammation but skin is not mentioned. I seem to be able to keep that in check with my daily Pilates and if that is its main effect I would rather not take it. I understand that it can cause blindness and, albeit rare, weighing up the pros and cons I am not sure if it is right for me. I would really appreciate some feedback.
  7. I have not visited the site for quite a while and I am sending this from Royal Free Hospital. I came here Friday night with renal crisis which thank goodness is now under control. I am not 2 and a half years since onset of diffuse scleroderma and I have the renal marker. I had a mastectomy January 2011 due to cancer and had to stop MMF as Prof Denton felt it could cause a return of the cancer. I had chemo between Feb and May and starting about July my skin began to rapidly harden everywhere except my back. My veins are no longer visible and my skin is extremely painful raging red with inflammation and, as the nerves have been crushed, really painful. I am taking paracetamol, 2 types of very strong pain medication and Amitriptyline for the pain and it still doesn't stop. It took 5 attempts with a tiny butterfly needle to draw blood for testing and I was screaming because it was so painful. They were unable to get a canula in and I am meant to be going down tomorrow for a central line in the jugular so that I can have iloprost. The problem is I had iloprost in July, August and October because it's all I can really have since immuno suppressants are not possible for me. I don't think it really made my skin softer and I have been looking up the possible pitfalls of a central line and have decided I am going to tell them tomorrow that I will give it a miss. It just seems so maddening that my skin is changing so rapidly so far into the illness. I had been told by Prof. Denton that it should plateau then soften at about 2-3 years but mine seems to have really revved up. I guess I am just feeling pretty fed up all round and I am still forcing myself to do my Pilates because it has kept me mobile but it hurts and feels like I am trying to stretch wood. Is this normal to go so hard this late in? When will it all stop?
  8. Hi again. I reduced the dose to 5mg for 2 days and that didn't work at all. Today I went back to 7.5 mg and I am still in a lot of pain with tazer type random shooting pains and the skin on my arms feeling like I have very bad sunburn and in addition sensitive nerve ending sort of pain. It itches badly too.It is getting very cold now but wearing sleeves is completely out of the question. This flare up has been going since July. That is a very long time and rather than improve it steadily gets worse. This year actually I have just had so much all round what with the cancer,mastectomy, chemo and all. Also I have morphed from a glam, slim young looking thing with long blonde hair to a "school dinner lady" brown curly short hair with whole chunks of grey, a big belly since I have gained around 2 stone, and to put the tin hat on it I can't wear a bra because it is just too painful so I have just one droopy breast. Never a good look. Still it's not all doom and gloom. 1) I am alive 2) I have 2 lovely daughters, a wonderful sister and an extremely kind and considerate partner 3) the cancer is keeping away. I am blessed. Thank you all for your support.
  9. I started on the steroids today and I don't feel like superman but the inflammation has definitely lessened while the skin on my arms is still very sore as though it were burnt. I called the hospital to see if I could reduce the dose to 5mg and they said okay, so tomorrow I will take the lower dose from then on as I can't imagine that I would have withdrawal on day 2. Thanks again..
  10. Yes, steroids scare me in many different ways. I am to have 7.5 mg per day which is a low dose they said. Hopefully I won't have to stay on them too long. Does that seem a low dose? My friend who is here as a day patient and also has the renal marker was on them since February 2010 and she was taking 7.5 and is very gradually reducing it and is now down to 6. It is such powerful stuff and I forgot to ask her why it's so important to wean off so slowly. What happens during the cut down period?
  11. Hi everyone. Firstly thank you for your support and suggestions. I got very little sleep last night tossing and turning but this morning I shared my fears with the ward sister who suggested that I say I don't want to go ahead with anything until I have had a review with Prof Denton. Shortly afterwards the rheumatologist registrar came to see me and said that the Prof thought it was best not to have the iloprost anyway now but has suggested that I start hydroxychloroquine sulphate? Which turned out to be Plaquenil. I had my first dose this evening. He also suggested a low dose of steroid which has always worried me. My mother had RA and suffered from bone fractures due to steroids. Mind you, that was 30 years ago. Anyway she said I could discuss it with him tomorrow when he does his ward round. I think as my skin is so horribly inflamed it might be a solution if the dose is not too high although I would aim to stay on it for the shortest time possible. I had small doses after my chemo as it is given routinely for a couple of days after each treatment and it made me feel like superman which was really weird because as soon as I was without it I felt like a balloon which had deflated. In other words it is a mask rather than a cure. The renal marker is polymerase which means that you are more susceptible to renal failure, it is sometimes linked with cancer as mine was. It could be that when the cancer cells were forming in my breast my auto immune system went haywire. Apparently there is less likelihood of lung and heart involvement with the marker and the Sclero plateaus at 2-3 years. I just can't wait for that plateau.
  12. Hi there and welcome to the forums. With all the warnings in the media I tend to steer clear of sun exposure and haven't used a sunbed since Crippen was a boy but since my natural skin tone is the colour of a maggot and foundation doesn't suit me for many years now I have substituted my morning moisturiser for a smearing of fake tan every two or three days. A healthy glow without the health risks. I would give the sun beds a swerve. Happy tanning. Vanessa
  13. I don't know what to say Amanda. Having a complicated condition like we do is quite simply extremely frustrating. Do you ever wish you could have your own specialist rheumatologist just for you and nobody else? I do. Someone who could spend time tangling with not just the big stuff but the irritating little issues too. I often do feel that even though we are getting the absolutely best care it would be so wonderful if they just had more time. Sometimes my head spins with the complication of trying to work out for myself, with the help of you guys and the Internet-just what to focus on and ask for help with. What happens to the people who are unable to take an active part in their treatment? I dread to think.
  14. Hi all I have not posted for a while as I underwent a mastectomy in January followed by ghastly chemotherapy. That was not a great success as even though I had very reduced doses an old problem of mine with my White blood counts presented itself so I had to stop after four overspaced treatments instead of six. At the moment I am in the Royal Free for Iloprost. It has been extremely difficult to cannulate me because my poor old veins are shot by the Chemo and I have been stabbed a little too often. Anyway whilst here I have undergone various routine tests including an echocardiogram and today a round Dr mentioned that my right side is "a bit dilated" and I will be given a repeat test in four weeks. However as I am now to come in to RF every 3 months she said I could have another test in October. What does this mean? I know it's not good news but I am not sure of the implications and I didn't really digest at the time what she was saying as she was in quite a rush. I worry that my cancer may metasise as I clearly cannot tolerate chemo if it does and it was aggressive. Because of my WBC Prof Denton says it could leave me more prone to a relapse if I started back on immune suppressants as my general immune system would be depleted so he has suggested that we do not medicate for the Sclero other than to come in more frequently for Iloprost but he said that before my echo results. Please could you let me know what the name of the dilation condition is and what the implications might be Thanks Vanessa
  15. I have just seen a general doctor, not one of my team She hadn't seen a copy of the echo but said not to worry about it. More tests when I come in again in three months with maybe a cardiac catheter to investigate. Could be chemo or Sclero. If it's chemo could even right itself. I think I had better call the Scleroderma team on Monday for further clarification. Meanwhile I am having my last bit of Iloprost and then getting ready to go home. Cant wait to crawl into my lovely bed. Vanessa
  16. Hi there I have just had breast cancer and it is my understanding that Scleroderma increases the chances of developing that too. Sorry to throw yet more cold water. Vanessa PS Remember to check your breasts regularly
  17. Hi Jeannie, Thanks for the quick response. I am messaging you from my hospital bed thanks to my smartphone. The iloprost is for my Raynauds and as a general skin softener as I understood. My last echocardiogram showed my heart to be perfectly normal so this was the first I had heard of any heart involvement. I don't know what to look up from what she said. Also no more Chemo for me as the level of dose reduction I can tolerate coupled with the difficulty I always have to raise my white blood cell count (WBC) as well as my dreadful reaction to it means that the oncologist said I could not tolerate Chemo. It's a case of wait and see. Any ideas? Vanessa
  18. Sending you love.
  19. Oh Amanda, I am so sorry to hear that you are having such a tough time. I didn't realise that ulcers were treated with antibiotics. Are they infected then? I hope you soon get some relief. Vanessa
  20. I have not posted for a little while but it is now almost 5 weeks since I had my mastectomy and I will be starting chemo on Tuesday. Are there any other Sclero folks who have had cancer, particularly breast cancer but also others who have had chemo for other types? I am healing well from the op but am troubled by "Cording" where the veins which would normally carry lymph fluid to the arm ( all my lymph glands for the breast were removed) have hardened due to fast forming scar tissue. This is doubtless worsened by the Sclero. It is painful and means that I have to keep stretching it to avoid losing movement in the arm. I cut my long hair a bit shorter because it is recommended as it can be shocking when it starts falling out if it is all long and gossamer like. Haven't got a wig yet but I will look into them. Vanessa
  21. Thanks Craig Yes I have been injecting myself daily with GCSF. I am going to have some bloods taken later to see if that has helped as today is day 10. I normally run on a very low leukacyte level and had problems when I was on Cellcept because of this. Before I started the chemo my WBC was 3.4 I do wonder though how these stimulant type drugs will affect my Scleroderma. Just have to wait and see I guess. Thanks for all the feedback Vanessa
  22. Hi All Thank you so much for your kind wishes and support. It all really helps. I started a new antisickness yesterday and that plus the fact that I guess this stuff is working its way out of my body means I am feeling MUCH less sick. What a relief. I have to inject myself every day with something called GCSF which is a bone marrow stimulator because I have a propensity even on Cellcept for my blood levels to drop very quickly. I get a bit scared wondering what it will do as far as my Scleroderma is concerned but I guess I have to just "gun" things down in order and hope for the best. Thanks all Vanessa
  23. You sound like a really fun girl! You have certainly brought a smile to my face and I look forward to hearing of your antics. Vanessa
  24. I had my Chemo on Tuesday and I have never felt so dreadful in my whole life. Everything you ever heard about it is true. I managed to projectile vomit, covering my entire bath, the walls, then after a dash to squark for my daughter(I had a sudden fear of choking in the middle of it all) my bedroom carpet, the landing and my bathroom carpet. I even wet myself for good measure. My darling daughter Samina gave me big hugs whilst I was crying at the shame of it all then donned her rubber gloves and got down to business. Johny my partner was dancing around in the background whilst I was telling him to skidaddle. We met 4 months ago and 2 weeks later I found I had breast cancer so I was not yet ready to share such a display with him. However yesterday morning he quietly explained that I am not to hide and he is more than ready to deal with whatever comes along. This morning I received the most beautiful letter from my other daughter Yasmin who is in her final year at uni and coming home for the weekend tomorrow. Once again I give thanks for my wonderful friends and family for I am truly blessed.
  25. Hi Shelley I think the doses are quite a bit higher than for Scleroderma use. I have been at the hospital this afternoon to finalise everything and was told that as my body fluids will be so toxic I must wash my clothes seperately from the rest of the family and run the cycle twice and that I should flush the loo twice too! My new name is to be Toxic Peg. The wig idea sounds great but I think would probably be quite expensive and probably take a fair time to organise. They said to expect hair loss in 2-3 weeks and to shave it clean when it starts. We get a wig on the NHS and I will let you know what its like. Fingers crossed for tomorrow.