Patient awareness

[Spoofy3]

Hi I am a 54 year old female,I have rheumatoid arthritis,lupus and fibromyalgia.I was put on Humira Injections 40 my every other week.I continued the injections for 2 years I suffered with migranes,neausea,muscle weakness,and other side effects.I have been diagnosed now with chronic myloid leaukemia and basal cell carcinoma.I urge you to consider the possible side effects before starting this treatment.I don't believe warnings are completely revealed to the patients on profound adverse side effects from this drug.My life will never be the same.

[helixhelix]

I’m very sorry that you have been diagnosed with these, and hope the treatment is successful. It must have been a horrible shock if you weren’t aware of the possibility.

It is a difficult decision to take these drugs, as they do increase your risks. As Sylvi posted just the other day it is important that you read the information given to you, and ask your doctors if you don’t understand any of it. All these risks are clearly set out in the Patient Information Leaflet.

But they are just increased risks. The drugs do not give you cancer or leukaemia or tuberculosis, they just increase your chance of getting it as all these things can happen to anyone. So we each need to decide for ourselves. On an overall level it’s clear that these drugs work brilliantly for thousands of people with no problem whatsoever and allow the, to live a normal life again. But for a small number of people they don’t so I’m so sorry that you are one of them.

I did worry about it for myself before starting these drugs (I am on Enbrel). However the approach I took is to do what I can to reduce my overall cancer risk since up to 50% of them are preventable, and then try to forget about it. Not sure what else we can do as life without these drugs is also unbearable.

[Hidden]

I think Helixhelix has said everything. I’m sorry your suffering. I hope your treatment works x

[Hessie5]

Hi Spoofy3 - sorry to hear about your diagnosis and I sincerely pray you get the healing needed.

As Helix mentioned, it's really difficult for us as what options are available? A life of deformed joint and pain without drugs or a bit of quality to life. It is so hard to predict what going to happen to our life. When I didn't take the drugs I was in such pain, tears, depressed and could not walk praying diet would get me through but my RA is deemed severe. It swept quicky and was malicious destroying my joints and tendons - felt I had no choice.

Did your consultant attribute your diagnosis to the biologic?

Sending you hope and strength to get through this. Hessie x

[rab1874]

Hi Spoofy hope you get the healing you need and it’s a balancing act as I would’ve been stuck in bed without the Methotrexate and Toxilnimumb which is the 3rd biological drug I’m on but it gives me some quality off life but also still have bad days as well,this disease certainly knows how to kick us when we’re down ,sending hugs xxx

[Mmrr]

Me too, had it not been for the treatments offered I would have been housebound for the past 3 years. It is a balancing act. But we should know about the potential side effects to permit choices to be made.

I do hope your treatment works.

[Lyndy]

Hello... I am really sorry to hear your news. I had a similar experience with enbrel which I think at least promoted ovarian cancer for me even if it didn’t cause it. Unbeknown to my rheumy team I was BRCA I positive.. a test they didn’t run before prescribing it.

I think that the warnings about cancer and heart disease are there but perhaps not to the fore as we are focused on getting rid of rheumy pain when we sign up to these treatments.

I do wish that hospitals were more holistic in their treatment tho, I mentioned my cancer symptoms at a rheumy review and was fobbed off.

Best of luck with all your treatment xx

[Pippy25 in reply to Lyndy]

I think you are right Lyndy when you say we should be looked at holistically, as we are a full body and not just a condition/ illness. I think in my experience I get frustrated by consultants I see for one thing only focusing upon just that and not seeing/ nor communicating with other consultants I see how this may affect the whole of my body and not just that one illness/ condition. Sometimes I feel I am the one left 'joining all the dots' so to speak and passing on information (wanted or not) from and to other consultants in an attempt to help them see any potential interactions or links with my body and health.

[Pippy25]

Everything decision we make having such life long illnesses has to be based on our individual situation and need, this is why it is so hard for us all and people just don't get it. For some certain medications work well and that is great.Yet for others based upon family health history, our own illnesses, drug combinations etc. it is a fine balance. As sylvi wrote in another post about reading the literature which comes with each medication and the possible side effects, our consultants, professionals involved should guide/ fully inform us and then we can make that decision for ourselves based upon our own situation before we embark on any medication/ treatments. As we still don't seem to have a clear path or cure as to why our bodies do what they do in respect of having auto immune conditions, it is so hard for us as we desperately want to feel well again. I send you my love and good wishes, take care x

[Ann2020]

My husband’s cousin had moderate to severe rheumatoid arthritis and was prescribed biologics. They helped with her pain and inflammation which was great, but within months, she came down with acute non Hodgkin’s lymphoma. Very upsetting as the biologics were the obvious cause. They turn off or reduce your body’s ability to fight cancer, with their effect on the tnf cells. The oncologist she had after she was diagnosed, was so upset with her rheumatologist and the treatment. It was clear to him and everyone else, what the correlation was. It’s a money issue with big pharma. Many of the studies which make clear the risky effects of these drugs are suppressed, not disclosed, or minimized, while other natural supplements and behavior modifications aren’t as supported by these folks, because they don’t make money off of things found in nature. They can’t be patented. This is important to remember. This notion came with the discovery of aspirin, with the Bayer corporation. I would not want anything that would impair my ability fight off cancer in any way. I personally was diagnosed with an anti-ccp number of 71 in 2018, and it is now at 42. My other inflammatory blood tests were always negative, but this one which has a high specificity for ra, has gone down 30 points. Also, I’ve never been on biologics or dmards.

Best of luck to you with this situation. If I were you if at all possible, I would go to a functional, holistic, or integrative medicine type of practitioner.

[Hidden]

I'm really very sorry to hear this. I hope you are being well looked after? I decided a while back not to touch any more drugs. The side effects can be horrendous, and are often dismissed by docs and sometimes patients. I oftrn hear folks say they are much better on the drug, but more often alongside complaints of side effects or drugs not eorking

Look after yourself.