Hi everyone, I just wanted to say thanks again for your advice and well wishes the other day. My husband and I went to see his specialist this week with lots of research in hand and he was wonderful! Happy to listen to all of our findings and questions and most importantly of all he started a med plan. My husband is now on 75mg Pred and Cyclophosphamide starting at 50mg a day and leading p to 150mg a day over a 6 week period. He is also looking into IVIG, Cellcept and Rituximab. So that's great. I just have 2 questions though. For any of you who have been on Cyclophosphamide, how long did it take to notice a difference? also Do you get the flu vaccination? I asked the pharmacist about this but she was worried that my husband might not have enough immunity to provide antigens to produce the needed response?

Ellie, I notice you are from Queensland, what specialist do you have looking after your husband? We have found a really good one in Brisbane who manages my husbands overall care. Cheers Lyn

Hi Ellie I have never taken cyclophosphamide, however, according to stats, it will probably take a couple of weeks to notice a difference, and up to several months for it to fully take effect. I will urge you to closely monitor his blood work during the period he is taking it, as it can do harm to the liver and other parts of his system. All immunosuppressants should be monitored. I would suggest at minimum bi-weekly blood tests, until you know that it is safe, then monthly after proving its efficacy. I would also urge you to get your husband, as well yourself the flu shot and pneumonia shot. As long as they are not LIVE vaccines, they are safe for him to get. The pneumonia vaccine is good for 5 years. You need to do whatever you can to protect his lungs now. I got my first shots just after getting out of hospital when I was diagnosed. I am first in line each for the flu vaccine. I hope this helps . We are continuing to pray every day. God Bless and Keep Up The Good Fight Wayne

lyngriff we have a Respiratory/Thoracic specialist here in Toowoomba, his name is Dr Sellars. We are moving to Brisbane later in the year and our specialist will be Peter Hopkins who is part of the lung transplant team at Prince Charles. Would love to know who you are seeing? Thanks so much Wayne you are spot on there. The plan for the next 6 weeks is 1 x 50mg tablet for 2 weeks then blood test and call for results, if all is well 2 x 50mg tablets for 2 weeks, then blood test and call for resutls, if all is well 3 x 50mg tablets longer term with monthly bloods and the Pred can be slowly be tapered down. I will organise for everyone here to get the vaccinations done this week too now that I know it should be safe. Better safe than sorry, there is no way he could survive a flu right now. Thank You :) I hope you are well.

Hi Ellie, I glad you seem happy with the specialist. I was on Cyclophosphamide for 12 months. I was given IV x2 treatments first and then continued until a maximum of 12 months. I was given the IV treatments in ICU and then orally. At one stage my specialist took me off it and onto Methotrexate but I had a relapse. I remember feeling great on the Cyclophosphamide and wished I could have stayed on it. Make sure he drinks lots and lots of water as a side effect can be bladder cancer. Staying on this drug for more than 12 months is not recommended due to the bladder cancer and Leukaemia side effects. Also, only he should touch the drugs or if you are administering it don't touch the tablets as it is a moderately high form of chemo and once on it you are considered cider toxic. I remember in hospital I had to have purple waste bags and the nurses had to wear purple covers etc. Also when your doctor takes you off the Cyclo you need to be aware that it stays in your system for a while, I think it was about 4 weeks. When I changed from Cyclophosphamide to Azathrioprine I still had the Cyclo in my system and became quite anaemic so my Aza dosage had to be dropped. As to the flu and pneumonia shots I have both and was given the pneumonia one whilst in hospital as I had had the flu shot before I got sick. How are his lungs going? Good luck with everything and I hope your husband gets stronger each day . Lisa

Ellie, Dr David Heyworth-Smith at Compass Immunology Clinic (based at Greenslopes Private Hospital). He has been brilliant with my husband and is very happy to include me in all sessions and decisions. We have been through a number of medications, but are now on monthly IVIG, small dose pred (4mg), and cyclosporin (which we are looking to taper out). Methotrexate was a disaster for my husband, as were a couple of other medications. All going well now, but we never get complacent about it. Take care, I have only been an observer on this forum until now, but it has got me through some pretty tough and scary times. Lyn

Hi Lyn, He is my doctor as well and he saved my life. I was in hospital at Greenslopes for around 9 months. He is the man. Did you know he doesn't like cats so I often buy him a gift with a cat on it!!

That is funny! We have an 18 year old cat, we might have to give him a photo of him!

I bought him a cat calendar once and then for Christmas in 2012 I got him an Angel of Healing statue, the ones that look like wood and I didn't realise it was holding a cat. He looked at me and said "is that a cat the angel is holding" Apparently, Greenslopes used to be overrun with wild cat and one day the roof fell in over his desk and a cat landed on his desk. Coralie said he screamed like a girl and that is one of the reasons he hates them. I also got a deadly infection around December 2011 and the form I got is fairly rare but he believes a cat gave it to me via a scratch. We have argued about it as my cat (1 of 3) had only scratched me three days before. Anyway, it is my firm belief that if I had had a different doctor and Rheumatologist - Dr. Phillip Vecchio - I would be 6ft under. One month ICU on BiPap machine and then a following 8 months on the ward and rehab. Prednisone has given me severe Osteoporosis with 5 crush fractures in my spine, broken ribs, broken tailbone and fractured sternum. Life can be hard but I wouldn't want to not be here.

Hi Ellie, it sounds like your hubby is on much the same med plan as me. I too am on 75 of pred reduced to 70 as of today and take 2 X 50 cyclophosphamide a day. I was originally on 1 cyclophosphamide a day, taking 2 on Mondays. Wednesdays and Fridays, and as I said above am now on two a day. It took around 3-4 weeks to notice the difference. But now my days are pretty good with only late afternoon and into bed time presenting a few little dramas symptom wise. I have read that it can take several months for the cyclophosphamide to work its magic. I really hope this is the one that puts this disease to bed. I am quietly confident. Do any of you Brisbanites know if Doctor Vecchio and Dr David Smith are in consultation with one another regarding this disease? I would really hope that they are bouncing off one another treatment wise, as Dr Vecchio is great specialist and Dr Smith sounds really good too from the post I have read.

Yes they consulted daily on my case for approximately 5 months whilst in hospital but David did finally become the primary specialist. David is an immunologist and Phillip is a Rheumatologist. David also does research in the lab as well as work at the PA and also each year he travels to Asia and works in clinics over there. Phillip would definitely refer you to hospital/David or both if he thought you needed. He did so with me and they consulted with others until I was out of danger and continued to do so for many months.

That is great to hear. I was just wondering as I am very loyal to Doctor V and did not like the idea of seeking more information through making an appointment with David as I felt I may have offended Doctor V. He is a good man.

Thanks Lisa! I have been filling up 4 water bottles and putting them in the fridge each night so he knows when he's finished all of them then he's drunk enough for the day. He's just still getting used to the extra fluid so is up a few times at night to go to the bathroom but he's getting the hang of drinking more earlier in the day. His lungs are still his biggest issue by far but today is his 4th day on the meds and he can walk about 20 steps without getting too winded so that's a big improvement. Still on oxygen all day but that's okay. He couldn't do his last set of breathing tests because he was just too bad, same with the 6minute walking test. He'll have a new HRCT scan in about 6 weeks to check inflammation and scarring. Thanks Lyn :) This forum has been an absolute god send for us. Until now it has been so hard to find the information we were looking for. Being able to just come here and ask is amazing. Dr Heyword-Smith sounds wonderful so we might try and connect in with him when we get to Brisbane. I think he may be one of the Drs that Dr Sellars up here has been consulting with so I must ask him. We will be seeing Peter Hopkins at Prince Charles as the main guy when we get down there just because he is the lung transplant guy and that option is still not completely off the table yet. lildreamer it's good to know you are on the same plan and are doing well. Hopefully it works as well here. It's such a long road isn't it? And you are all so lovely and positive *hugs* It makes me like Dr Heyword-Smith even more to know he doesn't like cats. Evil little critters lol. I'm going to be a pain and ask 2 more questions. I've just done up a diet/meal plan for my husband with a focus on higher quantities of food that is low calorie-ish to allow him to eat when hungry (all the time lol) but keep his weight normalised while on such high doses of Pred (I'm scared of his weight blowing out and ruining chances of a transplant if it's needed). And also to increase foods that are natural anti inflammatory and decrease inflammatory foods. Have any of you had any luck with diet improving symptoms? And lastly, this question is a bit embarrassing and I hope it;s okay to ask, but we really do need to know. I have read that intimacy can be an issue while on Cyclophosphamide because it can be transferred through bodily fluids. The information I looked at recommended no kissing and using protection. But it was also information for patients with cancer doing chemo. Would those precautions still apply for us or do they have a higher dosage do you think? I will ask the specialist but that is 6 weeks away. I hope you are all feeling well today and having a lovely easter xo

I am just starting to notice the weight change with me. Last week I was really concerned because leading up to and through my hospitalisation I lost 12kg and continued to lose and gain in the first two week. But over the last few days alone I have put on 3-4kg and my face is starting to puff up because of the prednisone. I have been trying to eat gluten free and buying those little breads that you need to toast twice just to make them eatable. I have increased my fruit and veg intake from next to nothing to at least three times a day (which is huge for me) and am generally trying to watch that I don't eat too much red meat or processed foods. I have been trying for at least 8-10 glasses of water a day. Four of which I have my meds in the morning. Have three servings of dairy 2 X Milk 1X yoghurt and also have those Youcult probiotic drinks. Eat nuts too. Now that I think of it, I never stop. I think it is inevitable that whilst on the high doses of prednisone the weight will become an issue, but that is the least of our worries and we can return to normal weight WHEN we get well. As for intimacy I have not heard about the transference thing, but it does make sense. I too will be taking extra precautions I think. Thanks for the tip. I do agree with you, this site is a good sent. I would still be in that lost world of horror and confusion if I didn't find it. Ellie, just a question as part of my investigating. Has your husband any mercury/amalgam fillings in his teeth.

The weight gain is a pain in the butt! I too lost about 15kgs in hospital and have now put it all plus more back on. Unfortunately, women get the "thunder thighs" - disgusting fat lumps sticking out from the side of the thighs and the camel hump on the back of the neck. Mind you it has nearly been 3 years and I keep promising myself to eat better. As to the intimate question - no help here sorry. My friends often say about meeting someone and my response is whilst kissing someone I'd have to say excuse me a minute while I suck on the oxygen! Ha! ha! I hope you all had a great Easter.

Lildreamer yes he does have mercury fillings. He's actually booked in to have his fillings done at the dentist but I think we might need to postpone for a little while. Lisa my husband was the same as both you and lildreamer with the big weight loss and then now he is doing the inevitable Pred gain. It's good to see him put some weight back on though, he was looking really quite frail. But we'll definitely have to make some changes because it's just going on too fast at the moment and it's bothering him already. Poor guy has had enough taken away from him over the last few months so I'll just try substituting first and see how that goes. My Mum In Law was on Pred for probably 20yrs+ and was skinny as a rake the whole time, no idea how she managed that one. Hahaha Lisa I can picture that too :)

How long ago did he have the mercury fillings put in?

He's had some of them since he was a child, lildreamer. He's 46 now so 30+ years for some of them. We've been together for nearly 19 years and he hasn't had any in that time.

Cheers.I am trying to rule out possible causes. How about a cortisone injection or celebrix tablets. Any of those prior to this happening. Sorry to snoop I'm on a mission.

Don't be sorry, feel free to snoop away :) We've wracked our brains too. No cortisone injections or celebrix tablets at all. He was on no regular medications at all, fit as a fiddle. He had a tooth issue and it had to be pulled out but no infection was present. Apart from that I don't think he's had so much as a cold for 4+years. Out of curiousity. Have you had any problems with eating bananas? After eating bananas his whole life he had two odd incidences. In one he ate a banana and immediately got a severe headache that lasted for days, so he stopped eating them. 2 days ago he decided to try again and it was a slightly older banana in a banana split and he was fine. The following day he had a fresh banana and within 5 minutes his hands were cramping like nothing I've ever seen. It was just bizarre to watch.

That is strange because I thought the potassium in Bananas prevented cramps. I too had a tooth pulled leading up to diagnosis, but I couldn't imagine that this has had an effect, but then again who knows. I suppose back to the drawing board.

What about stress levels in the year leading up to onset? I am also curious about viral triggers and time of year. Looking back on it, I know that for me personally I had been through several extremely stressful years in a row and if there ever was a time in my life where I was going to be vulnerable to a health crisis, that was would have been it. Then mid-Spring I got what seemed like a mild respiratory virus (it was in the first year if H1N1), six weeks later I was in the hospital with 30% lung function.) I'd always had one of those immune systems that rarely got sick and if I did I got well quickly. Of course there is the theory that getting sick helps keep your immune system functioning properly and appropriately. If it doesn't get this sort of practice, when triggered it then can go overboard into attacking the body and doesn't know how to stop. I still wonder about all these things too.

Kelly your situation sounds similar to mine. Lisa

I definitely think stress is a contributing factor. Like kellyb I have had several years of ongoing stress then a period of acute stress, during which I spent a lot of time at the gym (pretty much everyday after work) - looking back I was probably overtraining! My first symptom was the painful Raynauds which I had never experienced before. I obviously pay a lot more attention to different things happening with my body which I previously would have ignored/dismissed. The more I read these recent posts the more I hope my rheumatologist was right when he suggested the Jo-1 antibody might be a red herring...I doubt it with the little things I'm noticing but I guess time will tell.

lildreamer I thought potassium was supposed to help cramps too. I did a little research and found that there is a link between potassium and magnesium and that it can be difficult to keep one up if the other is down. So, I've added a magnesium supplement to his morning cocktail. No more cramps yet, fingers crossed it stays that way. Kelly and Lisa my husband's story is very similar to yours. It all seemed to start with a mild infection, some swollen glands and a little cold. Our lives were definitely a little more stressful that normal when he got sick as we have two special needs children and were also caring for my Mother at that time and his Dad was dealing with cancer. But when I look back now, I can see that the symptoms started a long time ago. I'd say potentially a year or more before he got sick was when we noticed increased cramping in muscles, muscles not repairing as quickly after exercise, some odd patches of skin, feet discoloring etc.

I agree totally. I too went to the gym regularly and recovered very quickly when sick and didn't even know that at some stage I had glandular fever. I have probably had the most stressful 2 years of my life without even realising as pointed out by my acupuncturist after prompting me to talk about it. I renovated 2 houses. Sold both and moved into a new one. I have also worked in a jail for 16years and over the last two years have been punched out by a filthy rapist and also cut down and saved a prisoner who had hung himself in his cell. Although shrugged off at the time I am wondering if all these factors have contributed.

lildreamer you might be on to something there. My husband also found out that he had previously had glandular fever but has no idea of when that might have been. And I believe that research shows a link between glandular and autoimmune thyroid disease? You really did have a stressful time beforehand!

Could be on to something here. You tell your Doc and I will tell mine.

I was dealing with the "Boss From Hell" when I was diagnosed early in 2007. I had asked my rhuemetologist about stress, as my GP had me tested for Lupis, and it's symptoms are stress driven. She said that yes, Lupis is triggered by stress, but stress has nothing to do with ASS. She said that I might get flairs in my Mechanic's Hands from stress, but as for the overall disorder, no. In the three years prior to my diagnosis I had had othroscopic knee surgery, my gall bladder removed, and three deaths in my immediate family. And when I talked to my pulmanary doctor I had asked about asbestos, since they had just been doing an abatement process in the building I work in, and I had had concerns about the safety precautions not being used by the contractor. He told me that the incidental exposure I had to the asbestos abatement would not have cause my lung problems. So nothing that I've been exposed to, either materially or any of the stress levels, have been a factor in causing this. They may, some day, find out what it is that sets this off, but right now, there isn't a single clue that ties us all together, other than the diagnosis.

Hi all Stress has definitely been proven as a major factor in most autoimmune diseases. I had become so stressed in my job, that I had quit and started another job. That was a couple of years before the real onset of the ASS. Looking back at everything, we are sure that I had the ASS as long as 5 yrs before it really hit hard. I had joint pain, stiffness, minor fatigue, etc. but had just attributed it to "normal aging" . When all hell broke loose in 2011 , we realized that this had been coming on for a while. Studies have shown that many of the autoimmune diseases can be triggered by viruses, stress, even environmental factors, often many years before we have the symptoms. That is one of the reasons it is so difficult to narrow down " the cause". I for one would be interested in knowing why, but am not going to stress out about it. My symptoms definately flair during times of stress. Just having a "bad" day can cause my muscles to weaken, so I avoid as much stress as possible. For me, it is just not worth it. At this point, knowing why will not fix it. As for rashes, infections, etc. I would not sit at home wondering what it may be. My instructions from my neurologist is that ANY sign of infection, or change in condition, I am to go right to Emergency to get checked. Due to being immunosuppressed, we are vulnerable and cannot take chances. Even a common cold could very quickly and easily become life-threatening. I take sulfa antibiotics 3 times a week to keep the chances of getting lung infections down. With ILD, the thought of a lung infection scares the #%&$ out of me. I am very careful about who I come in contact with. It has gotten me this far....... I hope that some day they are able to figure out how we got this, and how to fix it. For now I am just grateful I am still here, and am going to make the best of it, without stressing over it. God Bless, and Keep Up The Good Fight Wayne

Well said Wayne.

I know I have asked this question before and I for one am seriously considering this option. Is there anyone who may consider heading to Russia one day for HSCT (stem cell treatment with Dr Fredranko as seen on 60 minutes with the MS sufferers. It is a process of ripping out your cells and cleaning and freezing them, dosing you up with chemo for four days then replacing them. Lots of people lining up at the moment after seeing women with MS go over in a wheelchair and return after treatment going for 5km runs down the Gold Coast Beaches. Expesive process but still an option.

I hear a lot about Doctor David Smith at Greenslopes and am wondering if he is as busy as Dr V as I would like to also see him and rack his brain on treatment options too. Not that I am unhappy with Dr V, he is just soooooooooooo busy all the time with his Reumy patients and I am wondering if I should be looked at by an immunologists as this field is more specific to immunity diseases. I feel that I am a bit of a nuisance sometimes, ringing up through the week in a panic because of some crazy symptom and bothering DR V's secretary all the time. Any thoughts Alexgirl?

Hi Lildreamer. On the subject of the stem cell treatment, I would not be too eager to try that yet. Yes, they have been having some good results on MS, however that is a different disease, with different mechanisms then ASS. There are many different autoimmune diseases out there, and they tend to react very differently. Although it holds promise, I think it is way too early for us at the moment. Also, I think it may be a good idea to at least consult with the immunologist if you can. I have a team that I work with. Neurologist and Respirologist are main, with a Reumitologist on the side as consult. I know my Neurologist also regularly consults with an immunologist as well, just to make sure he is on the right track. The more minds they have on this, the better. As time goes on, you will get to know the new "norms" for your body, and will panic, or stress out less. It all takes time to adjust. Until then though, ask questions, and stay on top of things. If your doctor, or his nurse do not understand that, they you would need a new doctor anyways...at least that is my opinion God Bless and Keep Up The Good Fight. Wayne

Hi Lildreamer, I have been following stem cell/autoimmune disease research for a while now as my 13 year old also has an autoimmune disease, as do numerous other family members. Including me but mine is only Coeliac Disease. Here is something I had on favourites. It's pretty old now, I'll try and track a newer one down. http://stemcells.nih.gov/info/scireport/pages/chapter6.aspx At this stage I think my husband would do just about anything but I'm still feeling very cautious. I'm a hard facts and research girl and unfortunately ASS research is few and far between and what there is, is so small as to be almost negligible in some areas. That is why I'm here :) I would take the collective experience of everyone here over a case study of a few. As for calling your doctor often I wouldn't worry about it. What's happening to your body is new and scary and you don't want to add anxiety to that if a quick call can put your mind at ease. Hope you are all well today :)

Thanks Wayne, you always put me on the straight and narrow. I might just ask the Doc this week if he is consulting with anyone else on the disease. After all he is getting me good results. I just feel like shit all the time and hate feeling this way. Had my phenomena shot today and saw GP about throat swelling. Not a great deal can be done about the throat as it is part of it. With regards to Stem Cell treatment Wayne. From what I gather and have researched, it is a reset of your immune system and is used for a variety of immunity like diseases. I am in contact with Dr Fredranko from Russia at the moment and he has informed me that he will look into our condition and get back to me on if this treatment would be appropriate. What he has told me so far, which is very interesting is that the drug used through the process is Rituximab (big coincidence). However, I think there will be a long wait between responses as a lot of MS sufferers are now on board and heading over to get treatment from all over the world. But there is hope for us yet mate. As you say Keep up the good fight. I'm never going to stop searching for an escape from this horror and I will be throwing a rope over for all you guys.

Thanks Ellie. I just see the immune system like any other system that has a reset button, which can be accessed and repaired through a process such as Stem Cell. I know all immune diseases are different and have there unique symptoms, but at the end of the day they are all playing up and need to return to normal which I think the whole stem cell treatment does. I know I may sound a little naive, however, I am willing to give anything a go. How is hubby going? Is he feeling better? I forgot to ask how old hubby is, if you don't mind me asking? Just read that link Ellie and that further confirms my belief in the treatment. I will give the Russian another month to respond and get onto him again.

No you don't sound naive at all, don't think that. I am coming from a very fear based position at the moment. I agree with you on the reset button. I guess what I worry about too is that 'autoimmune' has become a bit of a catch all for "we have no idea what the hell is happening to you'. So is ASS definitely an autoimmune disease? Could they be wrong? How do they know? You can see how jumbled me head is with all of this stuff. But in saying that I used to work for a Biotechnologist, possibly one of the best in her field and she had great faith in Stem cell treatments in various areas. And I do trust her view so....... But look the reality is that if they can't find a treatment that works for him and things weren't looking good, I would fly him to Russia in a flash because a chance is better than no chance at all. My father in law had a stem cell transplant done last year and it really knocked him around because you obviously end up with no immune system at all for a short time. But he's really coming good now. He's been in and out of hospital so ill for a while but it turned out that was due to the Thalidomyde (sp?) he was taking and once that was gone he was great. Hubby is doing better I'm happy to say :) Thanks for asking! Just a slow progression at the moment but he's still just on the first stage of the meds and his dosage gets upped in a few days after some bloods. His breathing recovery is so much better and his o2 levels are a but higher now. I can't even tell you how relieved I am with how much more hopeful he is now that he's feeling more himself. He's actually drying some dishes at the moment and he's happy about it because he can actually do something lol. :)

Wow that is great news Ellie. I was so scared for you guys because I too went through the fear and am still going through it to an extent. I even dropped into a church this morning and prayed. I still don't know if it is the meds or a combination of both disease and meds that are causing me to have this constant feeling of doom within me. I felt I was improving some weeks ago but have since returned to this horror. But from what I gather through this forum we tend to improve over time. Today has been better than yesterday.

Ellie. I am so glad to here your husband is improving. Little steps forward are better then nothing. We take what we can get... I will continue to keep you all in my prayers. I think the fear is natural. We all feel it. I still "run scared" when something new pops up. Since there really is so little known about this disease, we are pretty much all test subjects at this point. We don't really know what "normal" is. The emotional roller coaster seems to be fairly common to us all. Partly due to what we have been thrust into, exacerbated by the medication cocktail most of us are on. I just try to take things 1 at a time. 1 day at a time. We do know this is an Autoimmune disease...that is to say that our own immune system has gone haywire and is attacking our body. That is why turning off the immune system seems to be our answer at this point. However, as we all already know, we all react differently to the different immunosuppressants, as well as require different dosages. It is interesting about the Rituximab. It is currently one of the IV drugs I am taking. I managed to get approved for it as a "trial" since it is not currently approved for ASS here. It works by suppressing the B-cells of the immune system. We are not really sure if it is helping a lot at this point. I will know more as I try to ween off my prednisone after my trip in June. What we do know is that it can have some serious side effects. So far so good for me. I look forward to seeing the results coming out of the stem cell treatments. Very promising indeed. Lildreamer. Don't ever give up your fight against this. Just don't be too willing to jump into something until you fully see what it is. As Ellie stated, as long as we are improving, why try something as yet unproven. I would do the stem cell treatment in a heart beat, if I knew it would help. At this moment though, I am doing ok and would not be willing to risk what I have gained for something totally unknown right now. If I start going downhill again, that may change. God Bless and Keep Up The Good Fight Wayne

I suppose the biggest fear is what will become of me when the main player prednisone is reduced. I have heard that cellcept is a good alternative?

I can't believe what just happened I wrote this big long reply and I just lost it. Bother, bother, blast! Hi everyone, I am seeing my specialist David Heyworth-Smith tomorrow and if you like Lildreamer, I will ask him what the earliest appointment would be for a new patient. Well I really don't want to bore you but I am feeling like crap. More aches and pains than usual, and my lungs feel like the capacity has reduced even more. I took myself off yesterday for a blood test so I will know tomorrow if my feelings are due to the disease or not. Otherwise I think it's back off to the psychologist as I am feeling a renewal of down feelings. Being a single mum, I am on a journey with my 16 year old son who is lacking direction in his studies and his attitude. Also, my mother and brother are not helping matters either. My brother has not rung me once or offered any helped since I was discharged from hospital 2 years ago and I can tell you I was on oxygen 24/7 and could hardly walk. Plus my mother has not been to visit in over a year. This is a person who was by my side daily for the first 2-3 months of hospital and then at my home 2-3 days a week for the first 2 months I was home. Now I have been royally dumped and the attitude seem to be "Well she's out of hospital and she's looks ok so she can handle things now". I can't even clean my bathrooms, let alone everything else. As a teacher working 3 days a week because I have to for enough money, I actually think it's too much. I have a teaching partner, who is a lovely girl but she has no initiative and wants me to tell her what to teach and when to teach it. So all in all, is it the disease or stress from things going sour? I am not a person who likes to feel out of control. I think I'll ask David about the Rituximab. Ellie I am so glad your husband is feeling a bit better, as I know that the teeny tiny steps he will be taking but I know how much it will mean to him. I thank you all for listening and I'm sorry for dumping on you but as you are the only ones who share this disease, you are the only ones who truly understand. Best wishes and hugs to all Lisa

Lisa.This is what we are here for and I for one look forward to these posts daily and have no problem responding on any or all matters. I am so sorry about the lack of support you are getting and am here anytime you want. I am fortunate enough to get plenty of support from family and friends and sometimes even wish people would stop asking just so I can stop thinking about it for once. I can't imagine how depressing it must be for you to have to go through this alone and hope that you find relief soon. I still don't know why these Doctors won't try the retuximab as this is a proven treatment with many benefits, maybe the expense and effort required is the issue, however, I am willing to pay whatever it costs. With regards to you asking your Doc. I would like to know how busy he is so that I could possibly see him. But I would also like to know if he currently in consultation with Dr V as under no circumstances would I want Dr V knowing that I am considering seeing someone else as I am very loyal to him and don't in any way want to offend him or make him believe that I have no faith in him. So if we can do this without mentioning my name, that would be great. I will pluck up the courage to ask Dr V one day if I should consider seeing the Dr at Greenslopes, but until then, I don't want ot rock the boat and as my lung specialist says, it is best to stick to the one Chef at the moment with regards to medication. I feel ok today with just some muscle activity.

Hi Lisa, I am so sorry to hear of your lack of support. I have good support from my husband but because he has also had 2 strokes, there are things he cannot do so I have decided to hire someone for only 3 hours a week and it has made a huge difference as I cannot lift much weight or clean well under the beds or wash floors. I pick up all I can and then schedule one project a week. Since your family cannot respond for whatever reason, are there any other support groups or home health assistance available? A little help goes such a long way especially during tough weeks. You found the right group as we understand the unpredictability if this disease. Best wishes, Mary

Thanks Mary for your kind words and I am trying to find someone to do some housework for me. The only difficulty is a restriction of funds and the fact I am not eligible for any support. I either had to make a choice of trying to return to work and the minimum was 3 days a week to try and live on the wages or to go permanently disabled which my specialist did not want me to do. I am still waiting to hear from my lawyers as I have a lawsuit against the GP I went to who has been found negligent by some of his peers. If the suit is successful I am hoping it will be enough to pay off my mortgage and then I will feel less stressed. I think these worries have compounded the lack of family support. Thanks Lisa