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Posts posted by Ronald

  1. On 4/3/2020 at 12:38 PM, Margaret said:

    Morning Ronald.....I'm in PA, USA, and have been under a *stay at home* policy going on the 3rd week now.  At first, it was hard, but we've gotten into a routine.  I am the one doing the shopping, etc, since I'm the *youngest*  (at 65 ) - hubby is on statins & has blood issues,  my sweet aunt Tootie is almost 90,  and Gareth has the UCTD and Immune deficiencies.  My hope is that since Gareth has been on Plaquenil since he was diagnosis'd, age 18, that he is going to be okay.  I had to pharmacy shop this past week to find one that could replace it for the next 30 days!!!  That's scary!!!   He had his monthly IVIg March 25, so his immune tank is on full.  :happy: We have chosen to have Gareth home with us, instead of in the group home, until this passes.


    As social individuals, it's hard not being together, especially with family members and close friends. :sad:  I miss my volunteer job at a local thrift store, but it's like the one comedian said *we're being asked to stay home, sit on our butts in front of the tv.  We're not being asked to take a gun and go into a world war*  My cell phone has had a major workout, too, connecting via texts/messages to everyone and keeping up with occurrences in our lives.  All of us are pretty boring right now!!!  :lol:   


    Stay safe everyone,     :hug-group:


    Mom to Gareth, 31 years old, DS/ASD

    I get out at the end of day and take a drive in the country, listening to music.  We are suppose to stay at home as well, but taking a drive out of town is not putting anyone at risk.  I know California is on lock down, we are on a voluntary one in Alberta Canada, it's a nightmare here when you want to buy stuff, out of stock, expensive, line ups.  I think another 1-2 months and we should be okay.  I was reading a good article on the Swine Flu pandemic of 1918 and 1919.  550 million people were infected, 20-50 million died, the second wave was the worse, but it died out and things returned to normal, just like this pandemic will, just need to hang on for a while longer.   I use video messaging often and it's great to see other peoples faces in real-time.

  2. Hi Ron here,  how are you coping with the pandemic?  I am in Calgary Alberta Canada, it starting to get bad here, everyone is urged stay home and a pile of non essential business, inc doctor offices are closed.  Going shopping is a nightmare, people hoarding, shortages long line ups to get in stores, I think its going to get a lot worse.  I am not afraid of the virus, I will respect it, but I will not let it control my life.  I have poor lung function, due to pulmonary fibrosis, from SD, but I am not afraid of the virus.  My mom is 78 and us boys will do her shopping for her, to limit her risk.



  3. Well, my doctor is stumped, she has no idea what's going on, extended my antibiotics 3 more days, doing 10 minute salt water soaks, fluid leaking from wound after soaks.  I think it's time for a specialist. Blood circulation very poor in that finger. This all started in 1984.

  4. 22 hours ago, dimarzio said:

    Hi Ronald, 


    Sorry that you are still having so much pain and problems.


    I guess that you may get to the point that you feel that the finger is worth less than the pain.  I hope you don't, but people live quite happily with a lot less than 10 fingers.


    Medical grade Manuka Honey might be worth a try if nothing else is working.  


    Good luck, whichever way things go.

    The infection is deep inside the finger, it started to drain on the 26 and 29 (clear liquid and blood), but still swollen and painful, I think they need to keep me on antibiotics for a few more days.

  5. Hi Margaret,

    My finger has been a problem since June 2019, an ulcer that won't heal.  A couple weeks ago it started to get worse, then swelled up and got infected, it was throbbing all the time and the entire finger was red and swollen. Been on oral antibiotics since 24 March, it has not got worse, but has not got that better, it did start to drain last night (bloody discharge, maybe pus?) I stopped antibiotics Monday, hope it's better.  I don't like taking antibiotics. 


    My doctor told me take them or lose the finger.  Not much of a choice.

  6. I have a strange ulcer on my left index finger.  It started about 30 days ago getting sore, now its black under the nail and swollen. Has anyone ever taken antibiotics before for ulcers?  I ask because since the circulation is poor how does the medicine get in there?

  7. On 3/9/2020 at 10:22 AM, dimarzio said:

    How much higher is our risk from this pandemic?  In the UK there have been 4 deaths reported and all seem to be in their 60s, 70s and 80s.


    It seems that  those with underlying health conditions or compromised immune systems are at significantly greater risk than the 3.4% average so far.


    The virus attacks the lungs, so anyone with a lung condition needs to be extra careful as should anyone taking immunosuppressants.  Is there a case for stopping or reducing these, perhaps?


    Keep  safe everyone and look after yourselves.

    I have had it since 87, my lungs at a 40% capacity.  I am not worried about the catching the virus, whatever happens, happens.  I am more worried about the supply chain being disrupted by people hoarding.   Too much negative stuff in the media all the time, I think if you take normal precautions you will be fine.  I still go out shopping, I just make sure I wash my hands after and disinfect my phone. Other than that, I am not letting the fear of this rule my life.  This will end and we will be back to normal again.  Just hang in there and try not to let all the negative news get you down.

  8. I have one bad finger on my left hand, the index finger.  Had a ulcer on there since June 2019.  Now I have another, under the finger nail. Has anyone ever had one of these?  I seen the doctor yesterday its not infected, I do wear a nitrile glove on that hand to retain moisture and that seems to help with that constant throbbing pain.  That finger is always the worse one for ulcers.  Any tips?

  9. 15 hours ago, dimarzio said:

    Hi Ronald, I would be very worried about bleach coming into contact with my skin.

    If the ulcers are open and not healing, I would give Manuka honey a try.  It has great healing properties and can help clear infections.  I recommended this to a relative with ulcers that would not heal for a couple of years and she said I was talking rubbish and suggesting quack remedies until a specialist on ulcers at the health centre gave her exactly the same advice.


    Not all Manuka honey is pure, some is mixed with other honeys and sugars.  Be sure to get the pure stuff if you do try it.

    Thanks, never heard of that before, just Googled it, very interesting. Thanks.

  10. On 11/12/2019 at 5:41 PM, Joelf said:

    Hi Ronald,


    Like you, I've always found that my lungs tend to hurt a bit after a lung function test. Unfortunately, I can't really reassure you about the result of your PFT's, but I would suspect that getting very anxious about them is not going to help you.


    With a chronic illness such as scleroderma, it's normal to experience depression and anxiety along with illness and so it might be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding your health issues are difficult to deal with.


    Kind regards,






    I was diagnosed with major depression, severe anxiety and OCD back in 2002.  I lost interest in computers, not sleeping and felt terrible, life was awful. After being put on Remeron, that drug saved me.  I could sleep 8 hours and I was always hungry.  I gained a pile of weight on that drug, but I didn't care, it made me feel better and doctors all said I need more meat on my bones.  Now the meds don't work anymore and I am seeing a new doctor in Jan 2020 for new meds.  I think my depression may be at work here affecting my sleep.  Just a gut feeling.  I have no lost interest in computers, that's my joy in life. 

  11. On 11/12/2019 at 4:34 PM, dimarzio said:

    Hi Ronald, When I was first diagnosed, the aches, pains and stiffness were so bad, I was taking little exercise and having sleep problems.  When I started to fight back, increase my fitness and force myself to exercise more, my sleep improved considerably.  It was a painful process, but one I am glad I put myself through.

    I normally sleep well, so long as I have been for a walk or done some DIY around the house or for one of my kids.  If not, a large glass of red before going to bed usually does the trick ☺️

    Increased physical activity may also improve your lung function, though you may, like me need to build up gradually.

    A sleep specialist told me that more human interaction also tires the mind and helps you to sleep.  If you are not getting much of this it might be worthwhile trying to spend a bit more time talking to people.

    In June/July?part of Aug 2019 I was walking up to 3-4 KMs a day, no problems.  When I got sick I was so weak walking was hard.  After I was better, I developed a bad cough that I picked up in the hospital.  Then I started to see my walking distance diminished substantially. Now I walk around the block thats only .3 KM.  I am winded.  There is something wrong with my lungs. 


    Went for the test today and one thing that's going to make a capacity reading accurate, is my weight.  Last time I had one done I was 170, now I am 128.  I was 170 because of antidepressants causing me to gain weight.  I have been on them since 2002.  Before that I was always 130-135 pounds. I should have told that to the tech that my actual weight should be 130-135.  I am losing muscle mass now, this weight loss is crazy.

  12. I just seen on my digital ulcers post I was complaining of sleep problems back on Sept 26, I had no idea they have been with me that long.  Wow. 

    I guess that is not new but the panic attacks are. Got Xanax for panic.  But they don't like to give you very much.

  13. I have to go for a pulmonary function test on Wed 13th and I am really worried. Last time I went was little over 3 years ago and I was at 42% lung capacity.  My doctor told me PF and chest XRay every 3 months.

    I am really worried about the test, my lungs always hurt afterwards from the forceful breathing and I am worried about the capacity being a lot lower.  I know it is, as when I walk I get short of breath, in addition I just started getting panic attacks 3 weeks ago, so if it's not one thing it's another.  They are really affecting my sleep, I can fall asleep okay but I can not stay asleep, last night was good I got 4 hours, the night before that 2 hours and 2.5 hours bed rest (no sleep).  So averaging 3-4 hours sleep everyday.  Any help would be appreciated.  My doctor knows all of this.

  14. Sweet, I am actually serious.  I use to eat a very poor diet and I think that made the process slow down.  Junk food and fast food was a main part of my diet my entire life.  This last year I have changed, exercising, eating real good and my SD is getting worse.

  15. Hi Pamela, I just may have to get use to it.  Seeing my scleroderma getting worse is a bit depressing, ulcers are really getting bad, and winter is not even here yet.  I guess I am lucky, this all started back in 1984 and diagnosed in 87, internal organs involved, lungs, GI, tight skin, etc. I cough so much you would think I had lung cancer. But I am still here 32 years after diagnosis.  Maybe its all the junk food I ate over the years.:happy:

  16. Hi,

    It's possible, and am not sleeping well at all, I get 3-3.5 hours sleep every night, I just cannot sleep. In the daytime I have a hard time functioning, due to lack of sleep.


    The infection and 26 days of IV and oral antibiotics really messed me up.  I think my immune system is not operating at full capacity due my my illness.  That's all I can figure out what's happening.

  17. Hi everyone,


    For some reason I am getting more painful ulcers on the end of my fingers.  This all started back in the 80's and when I was first diagnosed with systemic scleroderma in 1987. For some reason I am getting more painful ulcers that take a very long time to heal.  Not sure why all of a sudden they are getting bad.  Been very sick with an infection lost 22 pounds (not from scleroderma).  Any hints?  Any advice?

  18. On 8/31/2019 at 9:06 AM, dimarzio said:

    Hi Ronald.  I had a premolar out 10 days ago.  Very painful and swollen for a week and still sore if I accidentally bite on it.  No infection though and I'm sure it will be OK in a few more days.


    I do get the feeling that we Sclero sufferers do tend to heal more slowly though, as I've found with a few cuts and insect bites too.


    Painkillers are notorious for causing bowel problems.  I took a fair amount of pain medication and ibuprofen before and after the extraction and needed quite a few laxatives to get things going again. A well-known side effect of a number of antibiotics is is diarrhoea, so maybe one can cancel the other out.

    Only pain killer I take is Tylenol  (acetaminophen), extra strength. I tried an Aleve ( naproxen) and could not pee.

  19. On 8/31/2019 at 12:31 AM, Joelf said:

    Hi Ronald,


    I'm really pleased to hear that you're going to see a scleroderma expert and I do hope she'll be able to help and advise you.


    Please let us know how you get on, when you have your consultation with her.


    Kind regards,

    Went to ER by ambulance last night, swelled up really bad, face and neck, every hour it got worse, waited in ER 5 hours, they gave me 2 antibiotics IV, no sleep, got home at 6:50 ate (hard to eat so much swelling) and went to bed.  The swelling stopped.  My face is pretty bad though.  But the progression stopped with the IV antibiotics.

  20. On 8/29/2019 at 1:48 PM, Joelf said:

    Hi Ronald,


    I can understand why you must be feeling upset; hardly a helpful discussion with this doctor!


    As I suggested in my previous reply, you really do need to consult your scleroderma expert (or try an obtain a consultation with one, if you aren't seeing one at present). The average doctor/rheumatologist really does not have the knowledge and expertise to deal with the complications that can arise from such a complex disease as scleroderma.


    Kind regards,

    I am getting a referral to her on Tuesday, as I have not seen her in 3 years, they need a referral letter.  Thanks for the support.

  21. Thanks for the reply, I am in pain, lost a LOT of weight, weak, night sweats, not sleeping well. 


    Went to the doctor yesterday, my family doctor is on holidays, this old guy didn't examine me, didn't send me for tests, just said I am a little frail or something to that effect then switched topics and started talking about meds I have been on for 20 years, cutting me back. 


    I was so upset, I walked out of the office in tears.

  22. Hi,


    I had minor oral surgery on the 31st of July. The dentist cut away 5mm of gum on a lower canine tooth to gain access to a cavity.  It swelled up, but I was told that was normal. I was using a special mouth wash.  On the 7th of August I had the tooth filled and it started bleeding again.  On the 12th I went back to the dentist complaining about jaw pain and swollen face.  He said keep using the mouth wash. Later that night I went numb, could not feel the area he worked on. 


    August 14 I seen my family doctor, she took my temperature and I had a fever, she put me on antibiotics, 2 days later the fever broke, I went to another dentist complaining about bowel problems, and she put me on a new antibiotic.  I have been on that one since the 17th of August.  August 26 I went in to see another dentist, as the other one was on vacation. He said he didn't think it was filled with pus, just blood and fluid.  I asked if he could try and drain it with a needle, he didn't think anything would come out, but I insisted and he tried and nothing came out. Now the area swelled up again.  My antibiotics run out in September 1. 


    I have systemic scleroderma, diagnosed in 1987.  Lung, skin, GI, involvement, you know the drill.  Wondering if this delayed healing is all due to scleroderma. The dentist and doctor do not know what to do, I am still numb and swollen. 


    Any advice would be greatly appreciated.

  23. Joelf, my ulcers are on my fingertips.  Rare that I get them elsewhere, but I do have one on my right foot, on the side of it and it causes no pain like the fingers do.


    Glad to be back.  2 weeks ago I was diagnosed with osteoporosis and extremely low vitamin D.  I am on treatment for that now as well.  I collect diseases. :sad:

  24. I was diagnosed with systemic Scleroderma back in 1987.  In 1984 I started to have problems with circulation in  the hands and feet.  Then the finger ulcers came, painful.  My doctor a specialist in that area at that time (1992) said to use a solution of warm water and 50% bleach and soak your finger tips in them to soften them.  Has anyone ever tried that?  I have a real painful one right now, I should say extremely painful on that throbs all the time.  Just wondering what others do.  I try to keep warm and cream on my hands (I know cream does not do anything for ulcers).


    What do others do for the pain?

  25. Hi,


    My old account is not accessible. 


    My question is I have swelling in both legs, but my left lower leg is much worse.  I have had a 2 year history of this, when I went to the Rheumatologist 2 years ago, she sent me for a blood clot test and it came back negative.  I do eat a lot of salt.  But I am wondering if the leg swelling is due to SD or my lung fibrosis.


    I had a CAT scan of the lungs and they found some water around the heart, I did not follow up as my doctor gave me the boot as I was not able to make my appointments.  I have a hard time leaving the house, due to severe anxiety problems.

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