Does anyone have first hand experienc... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Does anyone have first hand experience concerning non-hodgkinson's lymphoma?

titanicus profile image
6 Replies

I have been diagnosed with Scleroderma and have an appointment with my Rheumatologist next week. As a prelude, I have been reading over the last report he sent to my GP. In the letter he mentions IV Cylophosamide and says this should be considered.

Of course, its all Serbo-Croat to me, I find it strange however that my GP has not mentioned it.

I don't want to be victimised by my inherent paranoia again. I know my white cells are bullying the red ones, and my Auto-Immune has gone on an indefinite holiday. I would be grateful for any information regarding this otherwise I might think something is being held back.

I shall explain this to my Rheumatologist and hopefully he may clarify things, he is a good chap. Just worried about things at the moment and would appreciate information regarding the lymphoma.

6 Replies
Dodder2012 profile image

I had to have a course of Chemo when I was diagnosed 2 years ago. been a worrying time, but it works! SO much better these days, GOOD luck, just remember to write down all your questions before you see your rheumatologist.

Mine's a good chap too!

titanicus profile image
titanicus in reply to Dodder2012

Thank you for your reply.Saw Rheumatologist yesterday. Because the medical profession don't yet have a cure, they rely on the input from the patient to give 'points of reference'. Q; I am tired 24/7 and my left knee has a stabbing pain that feels like a knife.It's worse in cold weather, is it the scleroderma? Answer was...,'probably'.

Self diagnosis seems to be the way forward to work with the doctors,because they have the means but don't yet understand the causes so they rely on patient input.

Having carefully looked through various possibilities, Sjogen's ticks all the boxes and I shall forward this to my GP.

Thank you again for your valuable help, take care.

roobarb profile image

Hi titanicus

I haven't been on this site for a while, but thought I'd check it out again now the weather is getting colder.

I was interested to read your post about cyclophosamide. I had 6 infusions this summer for lupus & over-lapping auto-immune conditions. The thought of chemo is scary, but it got things under control for me.

I was told it is given for lymphoma in combination with other anti-cancer drugs. For auto-immune conditions it tends to be used along with IV steroids. So it's something like a cocktail mixed up for each specific condition.

A lot of the drugs used to treat auto-immune conditions are 'borrowed' from other illnesses due to their ability to dampen down the immune system.

Do you have rhuematology nurses at the hospital you attend? If so, it might be worth giving them a call. They are usually better at explaining things in plain English.

Very best wishes. X

titanicus profile image
titanicus in reply to roobarb

Thank you for your information roobarb. I shall certainly call Rheumatology nurse as well as having a chat with my GP.

It is just frustrating because there must be half a dozen or more possible things going on, and they tend to mimic each other in different ways. Hence the ongoing test after test scenario.

I guess I need to be patient as all the questions asked by the hospital are geared towards pinpointing the miriad of possibilities this crazy disease Scleroderma presents.

(and hopefully have some blood swilling round my body instead of sitting in yet another load of phials in the hospital!).

I will also ask my GP regarding the IV cyclophosamide. Thank you again for your help in this matter. Enjoy the festivities!

Ashleigh27 profile image
Ashleigh27 in reply to titanicus

Hi I have been diagnosed with systemic Scleroderma and cyclophosphamide is on the cards for me. I am also a Chemotherapy nurse specialist and this drug is given as part of many regimes to treat a variety of cancers. But I can assure you it is also given to people with auto immune diseases to slow down their immune system, hope this helps. ask to be referred to a specialist centre, I was under rheumatologists and Ling specialists for a year before I was refereed, unfortunately things take time and I know its not easy, the waiting is often the tough bit x

titanicus profile image
titanicus in reply to Ashleigh27

Happy new year Ashleigh, and thank you so much for your input. I believe you have hit the nail on the head.

My auto immune situation is apparently under investigation, and when the IV cyclophosphamide was mentioned CANCER rang loud bells in my ears. I now understand from your reply that it is not the case.

Thank you and God bless you, take care xx

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