I have limited systemic sclerosis and pulmonary hypertension. I have been having gastric problems for some time and my PPI has been doubled to 40mg twice a day. My Town Hall was offering a service of osteoporosis screening at the price of £22, which I thought was quite reasonable and went along. I am sorry I bothered. It now seems that I am at risk of osteoporosis. I am going for a DEXA scan in the next three weeks and I did hear that it may be the PPI that may be the cause. Has anyone else come across this?

5 Replies

  • yes I have Osteoporosis but because of the Sclero I can't stop the PPI's and I don't even want to think about doing that. For at least the past 7 years I have been taking Fosamax and trying to go to the Gym as often as I am able. Sclero presents its own set of problems along with the symptoms themselves. For instance, I have severe large bowel involvement which has made me incontinent so walking or running is out for me, but strangely enough I find I can do a gentle workout at a Women's Fitness Centre and I am OK. Of course there is a loo on the premises so that saves embarrassment!!! As well I have started having an annual infusion called Aclasta and then I just have to take a calcium/vitamin D tablet once a month. Don't panic,it doesn't help and there are some things you just can't change and that's life. I am 70 now and I have never broken a bone except in 2004 when I had a nasty fall (entirely my own stupidity) and crushed a vertebrae.

  • Thanks for your help. I found it very encouraging I just hope that I will be able to do some exercise as with my pulmonary hypertension I find that i get very breathless. I am trying to get some help from the GP as to what exercise I can safely do but the pulmonary nurses don't seem to know what to do with me as I do not come under the umbrella of COPD. I do try to walk as far as I can which isn't very far and I do try to do some Pilates but I get very exhausted. No matter what the DEXA scan shows I will not allow it to stop me doing what I need to do.

  • I had one of those that said i had very thick bones . Had a Dexa and that told me i have osteoporosis

    the paid one only does feet and ankles the dexa does most of body

  • Hi Paleindian2, I can't do Pilates it is too exhausting and I had to join a group of 'able bodied' people who were just too energetic for me. I have some PH but not from the Sclero or COPD mine is from Mitral Stenosis which has been partially alleviated but not entirely. Also have very poor DLCO because of the Sclero so I know what you mean. The fitness centre I belong to has a circuit designed to suit women and I do just about half of what others do, but it is better than nothing and it is nice being in a place where people are laughing and talking and the music is playing and nobody cares how much you do.

  • I was diagnosed with sclerderma earlier this year and prescribed omeprazole for feflux acid. I stopped taki g it when I read about the side effects. I do not want to develop brittle bones. It can also interact with other medicatiobs, making them ineffective. I take clopidogrel to prevent blood clots as I have essential thrombocythemia. Ths wad dagnosed soon after the scleroderma. Omeprozol can stop the clopidogril working and I certainly dont want a blood clo. Ihave been having acupuncture for the pain in my feetdue tolack if blood folw. I mentioned the feflux and the acupuncturist inserted needles to treat it. Ihavebeen having reglarsessions an have had nomore problems with the reflux and am not taking any medication for it. It might be worth you giving it a go but make se yu find a reputable therapist.

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