stillriding

Members
  • Content count

    23
  • Joined

  • Last visited

Everything posted by stillriding

  1. Hi Just wanted to know if anyone has experienced a massive reduction in white blood cell count as a result of using methotextrate? Apparently I am low enough to be admitted for IV antibiotics and add another specialist to my list? Currently I am on antibiotics and spent last week in bed fighting (so I thought) the chest infection that I couldn't shake? Any reassurance would be greatly appreciated. Thanks SJP Sclero - my fat little hands; AIH; Mixed connective tissue disorder Diagnosed - July 2011
  2. Hi Buttons Yes, my WBC is sitting at the low end of 'normal'. But I am on a lowered dose of MTX just in case. Glad I am not the only pin cushion!! Cheers Simone
  3. Shelley I have never noticed that, but I did just have a chuckle. Thanks for that. Also, most of us in here are under a secret log in name so I guess that's not too embarrassing.... :)
  4. I just wanted to say, thanks for this post. I have the fat little sausages for fingers and winter is hard for them too. But they're mine and they still work, so I'm pretty happy about that.
  5. Noooooo! not pathetic at all. I think we all have our things that freak us out. Mention MRI's and I'll probably pass out! (heart beat increasing just thinking about it) Update on the WCC - worth posting in case someone reads in the future, my specialist now believes it was the actual virus that I had that caused my count to drop. She has had three other patients since present with lowered counts who also were unwell. Possible. I guess when "normal" people get sick they don't march off for a blood test. Those with a lowered immune system do! Feeling like a pin cushion at the moment - but I am feeling healthy which is GREAT! Bye
  6. Hello Amanda, Thank you for your concern. My count has returned to the 'normal' range. It took exactly two weeks from my last methotrexate (MTX) injection! I rested, took 10mg of Folinic Acid/day and stayed away from public confined spaces. My specialist does not think it was the MTX and I had a second specialist opinion that also agreed! I have not resumed my weekly injections as I'm a little too nervous to do this until my WCC (white cell count) increases. My specialist agrees. Interesting though is I have a friend with MS as she doesn't take antibiotics as they muddle up her medications also. Perhaps it was a drug interaction ie antibiotics/decreasing prednisone/MTX that caused my WCC to freak out. Who knows? Good news is I'm not having weekly injections for at least two more weeks! Simone
  7. Hi! I posted this on the Australian Sclero Forums and would like to ask a wider audience: Just wanted to know if anyone has experienced a massive reduction in white blood cell count as a result of using methotextrate? Apparently I am low enough to be admitted for IV antibiotics and add another specialist to my list? Currently I am on antibiotics and spent last week in bed fighting (so I thought) the chest infection that I couldn't shake? Any reassurance would be greatly appreciated. Thanks SJP Sclero - my fat little hands; AIH; Mixed connective tissue disorder Diagnosed - July 2011
  8. Hi I have had a liver and muscle biopsy and luckily avoided a heart biopsy! I won't even start on the number of MRIs, CT scans, ultra sounds (my fav), blood tests... , etc. I think I am lucky too. The liver biopsy I decided was necessary to determine the level of trouble my liver was in. I had mild pain and recovered quickly. The muscle biopsy I felt was not crucial for diagnosis. I was started on very high dose prednisone before the pathology reports had even come back and I could not even get hold of the results until 6 weeks later. By then I was well into 50 mg prednisone a day and building up my Methotrexate dose. My CK was in the 4000s (no this is not a typo), I could walk fine, however I had lost all my muscle mass though and could not pick up the kids. A year later I have a diagnosis of possible polymyositis? Or dermatomyositis? No-one really is too fussed on that point. After the muscle biopsy I was in a lot of pain and it affected my recovery dramatically. I have an ugly scar on my left thigh — even though I begged for them to go higher where it could not be seen. Sorry my bad experience does not need to be yours, however, I went into the hospital being able to walk and get myself to the toilet and left 2 weeks later in a wheelchair needing help! Be absolutely certain that you MUST have this test for their diagnosis. Yes, I understand that they want to be certain before they out you on prednisone, however, the gains from the test did not outweigh the invasive and the pain. Scars I can live with. Ask - what will this test show? What will this test not show? Be absolutely certain you know why they are doing it. A year later I have just had my first reading of CK lower than 200 and I am able to live a simpler but almost normal life. I sleep a lot more and I refuse to let any forms of stress enter my life! However, I have a nice belly from the cortisol and obviously the scars. I also have osteopenia due to the prednisone leeching the calcium out of my body. I would take the weight gain any day over all the other possible side effects! I also went to a psychologist once a month during my initial treatment and it helped a lot to talk about everything and especially helped me see the positives out of all of this. This was great for my self esteem and I don't mind people asking if I'm pregnant again! I usually laugh and say, "No way, the first 2 nearly killed me!". Good luck, lose the fear and start asking questions when you can. Get second opinions. And worst case - I hope you have a quick recovery. My ride is not over - I'm riding the winter through with few white blood cells due to the Mex working a little too well! And there was that movie I wanted to see....
  9. Thank you Jo and Robyn for such speedy replies. The PDS always scare me however I chose one sentence that seemed the most encouraging "Bone marrow recovery typically occurs within two weeks after the withdrawal of MTX." So hopefully next week will see an increase in my blood count. Cheers Simone
  10. Amanda Thank you for sharing your grieving process. You are not alone. Yes, I have also said goodbye to my previous life and I actually commented to a friend of mine that I feel like I have lost 9 months of my life. She actually corrected me and said "no you are transitioning". I gave her an odd look, but the more I think about it I realise that she is right. I may have come out of the high dose prenisone phase, but really I am transitioning my life and using my new network, new hobbies and new body to start over again - but differently. I secretly suspected in my pre-illness life that I probably was overstressed, overtired, underweight, over-it-all and something had to give - and it did - my health. I have transitioned into a slower individual, who takes the time to watch the birds, pick flowers, play with the kids, cook healthy meals and send lots of love instead of anger when someone takes my parking spot. I have also learnt to pick up the phone and ask for help. I also can accept help and not feel guilty if I need to spend days on the lounge resting. I was offered counselling from the start and I just went along for the chat. I learnt a lot about coping with energy levels and dealing with relationships, life, grief (shedding tears for some beloved sports I have given up) etc etc. I also decided from the beginning to add to my massive list of medications an antidepressant - which helped restore my sleep patterns and I also think has kept me more up than down. And Shelley, your gift of a "moment of pure silence" really says sooooo so much, thank you. Amanda I hope your journey is going ok. I send you strength, vitality and love. Simone
  11. Hi Steve I was wondering if you made contact with the Scleroderma clinic in Sydney? I'm off to see my Liver doctor next week, but haven't yet made contact with Sclero experts. Also how are you going? Cheers Simone BTW Jaggers I loooove Tasmania. It is beautiful.
  12. How are you going, Keep Smiling?
  13. Happy Valentine's Day to everyone who reads this post. I love this forum as it reminds me that I am not alone!! I am sending you all love.
  14. Hi Steve, Sorry to hear of your diagnosis. I thought I would say hi as I also started my journey similar to yours. I also live in NSW-Sydney and think our weather is probably okay for this odd disease. Mind you I have removed skiing from my favourite sport list! After I had my carpal tunnel operations my hands just never returned to 'normal'. They remained puffy and looked a bit odd. I was also very fit at the time. I am 36 and a mother of 2 young children. My recent diagnosis was not Chronic Fatigue but Sclero/Auto Immune Hepatitis/Polymyositis. After coming out of the fog of high dose prednisone for 6 months (still reducing) I have realised that I have been given another chance at life. I enjoy my time with the children - playing and running after them has become a gift rather than a chore. I have created personal 'spare time' with the help of my network. I now spend my 'spare' time meditating, practicing yoga and reading books. I am on weekly methotextrate injections which so far has had few side effects - I think I will take almost anything to get me off prednisone. Anyway, that's me, Take care Simone
  15. Hi All, I have been on immune suppression medication for about 3 months now, and I am sitting here with a very sore throat. My general practitioner gave me a script a while back and mentioned that if I start to get ill (the normal kind of ill) that I should use my antibiotics ASAP. She said this was because my body doesn't have many fighting mechanisms left and I could actually be a lot sicker than I feel. What is everyone's experience with general illness? Is it no longer the case of letting it run its course? Thanks. By the way, my specialist has advised that if I get really sick then I can stop my methotrexate for a few weeks until I feel better.
  16. Great advice! I saw my general practitioner and yep ended up on the antibiotics as well as upping my reflux meds. But I was advised against letting the illness run its own course. Thanks.
  17. Hi Keep Smiling, Sorry to hear about your illness. I thought I would say a hello as I also live in Sydney and have no sclero specialist. I do however have a rheumatologist who has many patients with odd things. I see her out of St Vincents Hospital Clinic in Darlinghurst. I see her as my hands are typical Raynauds/thickened wrists, but I also have muscle problems that indicate possible polymyositis/or dermatomyositis? But the jury is still out on what they are calling it other than mixed connective tissue disease. I also have autoimmune hepatitis and it was the liver specialist that started checking out the bigger picture and put me in hospital. (I have also seen a cardiologist and neurologist!). But what I wanted to say was keep questioning the diagnosis and don't be afraid to get second/third opinions. Ask for another specialist. If you are uncomfortable then you need some answers. If I had listened to the first specialist I probably would be in a wheelchair. Sorry not much help but definitely a BIG hello and sending you lots of strength. Still Riding
  18. Wow whats with all these drugs? I have scleroderma (hands/feet), muscle and liver involvement. Diagnosed last month during a stint in hospital. I have gone from NEVER taking a panadol to 7 tablets (including supplements)each day. I struggle every morning and mentally talk myself into it every day (yes take the pills, yes youre doing the right thing blah blah blah). Currently I am on 50mg of prednisone daily (weigh 50kgs) and I hate it. I did some large pred doses in hospital so I am into my 3rd week of prednisone and looking at maintaining a high dose for 2 more months before weaning. This is apparently to give the Methotextrate time to work (weekly subcutaneous injections). What are everyone elses experiences with prednisone? My mind never shuts off and last night I ended up taking sleeping tablets just so I could relax. Is this really a case of put in the tough yards with the prednisone now so I can quiet this disease down? How does everyone "function" on prednisone? Do you get used to it? Mind you I am also slowly returning to strength so I also believe the missing key here is exercise. I made it to the mailbox and back before this rain set in yesterday and enjoyed every liberating step. Is the "fix" worse than the disease or is it just another pandoras box? Your thoughts appreciated. Simone
  19. Hi SusieQ I always was nervous before IVIG infusions. I ended up always dragging my dad along or husband. They were so supportive and would end up helping me de-stress and pass the time. I also have small children and its hard. Sending you strength. Simone
  20. Hi Jean I guess you are right. I found it so hard to move in the mornings and sometimes just one flight of stairs was a challenge. I find myself bounding up and down the stairs, forgetting what I was like a mere month ago. Yes, its a powerful drug and a strategy with my specialist to get off it. Thanks for keeping it real. Simone
  21. Hello Befuddled My first specialist at a small private hospital told me "I have only seen one or two cases of auto immune hepatitis but this is how you treat it...." He thought that my hands not working (raynauds etc/skin tightening/muscle weakness) was not as severe as my liver problem and did not investigate it. I gave him the flick and went for a second opinion as I felt he had missed something in his hurried expensive appointments. As a result I recently spent 2 weeks in hospital trying to diagnose this thing. I had every test that the 4 specialists looking after me thought necessary. I have ended up with a diagnosis of scleroderma (hands/feet), polymyositis and auto immune hepatitis. Each test eliminated or confirmed something. If I had not had a very cluey liver doctor on the case, who picked up the myositis from a blood test perhaps I would still be wondering what was wrong with me. I am fortunate to live in Sydney, with access to a fantastic general practitioner and specialists. As a result of this experience I also have a lot of base line data that I can compare in years to come. So instead of saying, I think my Lungs/or swallowing has gotten worse - I can confirm this. I also have read lots and lots, and I think that "patients" know a lot about their diseases and it is really worth scrolling through the pages of forums and websites to hear others experiences. I have never used a website to diagnose but more along the lines of "I will ask my doctor about that". I think the biggest problem we have when first trying to diagnose is not knowing the right questions to ask. Good luck finding a specialist who is experienced with "weird". I had so much attention in hospital because they were all so fascinated by me. Hmmmm. I am seeing my Rheumatologist next week and I have a sneaking suspicion that my diagnosis is still not black and white on paper yet. But at least we know my liver is dodgy and my poor hands are going blue! Good luck trying to pin this one down. I hope this has helped you a little bit, Simone
  22. Yeah wow! Lots of experience out there. Thank you for all those thoughts/comments. I definitely agree that we know our bodies and even when those doctors are saying "no no no its not the meds" I think we really do know. Thanks for the links re renal crisis....this is what I am referring to when I say "Pandora's box". I am pushing to wean off the prednisone as it really is a powerful and scary drug. I have weekly general practitioner checkups and my specialist is fortnight so I will raise these issues. I have been lurking around this website reading everyone's stories for a while so its nice to finally post and become involved. I also enjoyed a chat or two but the time zone is a little hard. I call myself "stillriding" because up until about 2 months ago I was a mountain bike rider and my future goal is to be "stillriding". Sending good thoughts to all for a good day.
  23. Hospital related: First porter turned up at my hospital room with a wheel chair to take me for an X-ray. I looked at him and told him, "no thanks, I'll walk". He looked flabbergasted and actually said " I don't think I can take you if you don't sit in the wheelchair, no one has ever walked before!". I told him to push his own wheelchair and I walked next to him. Second hospital porter: This time I needed the wheelchair (muscle biopsy OUCH). Me:- "Wow you must have had a hard time learning your way around the hospital". Porter:- "It has taken a while but I now NEVER get lost". After ten minutes of waiting in the reception room I realised he had left me in the wrong department/ wrong floor at 5pm when they're all going home. I was not going to miss my MRI so I asked a complete stranger to wheel me to the correct place. Hmmmm :emoticons-line-dance: