I have just had my check up at the Royal Free and my consultant has arranged for me to have pamidromate infusions for my calcinosis. Has

[Monika]

anyone had this infusion and, if so, has it helped and were there any side effects. Thanks a lot

[living-the-dream-ssc-ray]

ooo Ive not heard of that before! I would be really interested to know how you get on with that ! Ive got huge lumps on my knees as well as nose, toes and fingers ! Who prescribed this for you ?

[Monika]

The consultant I saw was Dr.E Derrett-Smith. I have just looked it up on the internet and not sure I want to go ahead as I am not sure it is not experimental in Scleroderma. It is an infusion used with people with cancer. I am seeing my GP in the morning so I will discuss it with her. I will let you know if I go ahead and if it makes any difference to the calcinosis. I have also had a referral to the Trauma and Orthopaedics dept with a view to having some of the calcinosis removed surgically. Have you every had this done and, if so, was it a success. It just gives me a headache thinking about it!! Take care

[Peanutbutter6 in reply to Monika]

Hi Monika, I have prominent Calcinosis , knees elbows forearms spine buttocks tops of leg, inside breasts, everywhere ! Had 4 infusions of Pamidronate, did no good at all , I had mild symptoms of flu after 3 doses and after the 4th I felt really poorly for weeks. Take care, hope this is useful x

[living-the-dream-ssc-ray]

Hiya - no Ive not had any surgery to remove mine. I have either picked them out or still have the lumps in situ I have a massive lump on my left knee and I have scarring on both knees and finger tips and the bridge of my nose from calcium ! Not sure if it is linked but since I started having regular juicer drinks each day, I have not developed any new ones ! As well as I would not recommend the picking them out option as I had to have years of continual antibiotic treatment which has totally messed my gut and mouth up with candida - happy days Are you on facebook ? there is a scleroderma uk group on there where some of the members have had surgery - so they may be able to help you with that ! Ive not heard of your consultant.... have you been to see Prof Denton at the Royal free in London ? I would wholly recommend you ask your gp to refer you to see Prof Denton for his view..... its your body ! Sending you lots of wellness wishes

[Monika]

Hi living-the-dream-sac-ray, thanks for your reply. The consultant works under Professor Denton and is part of his clinic. I used to see him regularly but I haven't actually seen him in person in the last couple of years. Although, saying that he did pop in and see me with the consultant last year. I had a long chat with my doctor this morning and she thought it might be a good idea to see about having the large lumps on my elbows removed but not to do the hands as there are too many calcinosis lumps. Also I would leave the ones on my feet. I also discussed the pamidronate with her and she was surprised it had been recommended for the calcinosis as it is usually recommended for people with osteoarthritis who need to build calcium!! So not sure what to do - also she says most people feel very feverish and flu like for a couple of days - heyho decisions, decisions!! Having just had a couple of days in bed feeling really bad with bowel problems not sure I want to be made to feel worse! I make a green juice every morning - what sort of juices are you making that are helping the calcinosis and also I am on Facebook so how do I connect to this group. Sorry to ask some many questions but so good to talk to someone in the same situation. I did say to the doc this morning that I was now fed up with scleroderma after twenty years

[Monika]

Sending you lots of healing thoughtsxxxx

[Peanutbutter6]

Prof Denton sent me to see Orthopedic specialist at Royal Free, he suggested drilling out calcium lumps, but thought they would more than likely come back. Also seeing plastic surgeon to put some fat from my tummy into my feet to make walking less painful. X

[Monika]

Hi Peanutbutter6, the Orthopedic specialist I have an appointment with is at the Royal Free. I saw him ten years and he drilled out my fingers but the calcinosis came back within 6 months so I was just hoping that having been referred again they might be some new treatment - I think it is wishful thinking!

[Peanutbutter6]

Your calcinosis sounds as bad as mine. Is it Mr Goddard your going to see at Royal Free?