Starting Biologic

[RosieA]

I do understand that the jury is out re active RA / Biologics and the increased risk of lymphoma and I believe that more current research is veering towards that there is no increased risk from taking a biologics. However..

Some form of biologic is probably going to be my next step and wondered if anyone with a family history of non hodgkins lymphoma was taking biologics and what the discussion / advice had been. I know it's a long shot but any extra information would help.

I have, of course, discussed my concerns with the hospital and they are going to seek advice from haematology. Just trying to stop my tummy from churning!

Kindest thoughts.

[AgedCrone]

Different Biologics are suitable for different types of NHL & at what stage of recovery you are ....so really the information you need can only come from your doctors.

But I can reassure you..I had cancer & have been on a Biologic successfully for 4 years now with no problems.

So stop the tummy churning....there will be a drug suitable for you.

[RosieA in reply to AgedCrone]

Ah, thank you. It is a little brain worm I admit. My father died of a rare N-H Lymphoma and I was with him every inch of the way. We are investigating exactly which one as we think it is the one indicated in the Humira phamplet. Little consolation to others, but it appears to significantly target younnger men more than women. Yes, I have read the discussions on this forum and realise how sucessful these drugs have been to many of you.

I think I will have little option as MTX was not sucessful and LEF / HYDRO have created mouth sores / blisters. So really no option. Still, once I have got the concerns out of my system then it will be full steam ahead. No doubt, I won't look back.

Thank you for the reassurance, you have certainly been through the mill, but hopefully are in a better place now.

Kindest thoughts

[AgedCrone in reply to RosieA]

Sorry to hear about your Father..but as a woman it sounds as if the odds are in your favour?

Right now I’m nursing fractured vertebrae ..I must learn to stand in my own two feet!

I had an MRI on Monday..so once that has been read I will know what....if anything ...can be done.

The only good thing about this lockdown is I haven’t been dashing around ....so it has got easier as I have had plenty of time to lie flat on my back.

Good Luck with the Biologic whichever one is chosen for you.

[springcross in reply to AgedCrone]

I can sympathise with you there AC. I had two wedge compression fractures in between my shoulder blades in 2004 (ish), one on top of the other - T4 & T5, I lost about 4" - 5 " in height, three weeks in hospital and six months off work and ended up with kyphoscoliosis as a result, all because of a GP who wouldn't listen. It must be difficult for you being on your own with no help. xx

[RosieA in reply to springcross]

Gosh! What a terrible time both yourself and AgedCrone have experienced. I am sorry.

[AgedCrone in reply to springcross]

Wow..I can’t afford to lose any height..I’m only 5’4” to start with!

Luckily my neighbour has been shopping for me....& I’m used to getting on with things..,became a dab hand pushing stuff around on my little wheeled vegetable trolley when I was on crutches!

I have had exactly the same I with my GP.....I had a fall ...& went to see him....I also bruised my arm very badly which he was very concerned about .....I kept on saying to him I have hurt my back and he virtually patted me on the head and said “oh let’s wait and see“ Five weeks later I literally demanded an x-ray and he then told me I had two fractures at T5 /6 and I do know my anatomy and T5/6 is not at waist level so I asked my rheumatologist to look at the x-ray and the fractures are at T 12,

Just waiting to see what comes next......hopefully injections or physio...will not be going in to any hospital right now!

[springcross in reply to AgedCrone]

GPs have a lot to answer for sometimes. I had gone to mine to tell her I wanted to come off of the BP med I was taking as it was making me feel ill (bit dizzy and sick), she said my BP was still not under control and to double the dose. After a disagreement with her I agreed to try for 2 - 3 weeks but told her that if half the dose makes me feel ill what is double going to do. Three nights later, I went head-first down the stairs from top to bottom, I was so dizzy and fainted as I tried to make my way to the bathroom to be sick (I have never fainted in my life before). I feel really bitter about it all these years later.

Your GP sounds condescending so it's a good job you speak up for yourself. What on earth was he thinking saying T5/6? What could you have done if you did not have a Rheumatologist to ask, it's almost scary. Hope all goes well with the recovery. xx

[AgedCrone in reply to springcross]

Luckily I have friends who are doctors so I can usually get some help...but some people aren’t that lucky. Luckily I go to a multi doctor practice so I can avoid those I don’t like...thankfully I don’t need to see them often!

[springcross in reply to AgedCrone]

Yes, I've had a few like that in the past. Nowadays, you're lucky if you get to actually see one in our practice!

[AgedCrone in reply to springcross]

Right now there are no bookable f2f appointments....they apparently prescribe over the phone...I presume if needs be they arrange something...or send you to A&E?

[Fruitandnutcase in reply to springcross]

That’s appalling isn’t it made even worse because some idiot didn’t listen. Hope you both get a bit of a relief from your pain soon 💐

[springcross in reply to Fruitandnutcase]

I think mine was a bit high and mighty. She was one of those who had qualified and then spend twelve months at a practice before moving on. It was sixteen years ago but if I saw her now, I would recognise her immediately. I'm still living with the consequences of her stupid decision, but at the end of the day, maybe it was my fault for being so stupid as to agree to what she had said - it didn't make any sense after all.

[Fruitandnutcase in reply to springcross]

Not your fault at all, back then you probably didn’t know then what you know now.

I have a friend who my doctor sent home insistent that what the friend thought was a DVT was nothing of the sort - think she said it was a varicose vein.

Fortunately my friend asked another friend to take her to A&E because she’s had a DVT before and knew what was what - when she was treated she was told she was lucky she turned up when she did. We really do need to be proactive in our treatment.

[springcross in reply to Fruitandnutcase]

Absolutely. A couple of weeks ago I stopped a BP med as it was making me feel like I was going nuts. I rang the nurse/practitioner who I am under for the BP and told her, she was not happy and I had the spiel about how dangerous it was etc. She was less happy when I told her I wanted to stop taking one of the others too. To cut a long story short, I am not taking either of those meds now and feeling much better for it (one of them was the same ones I was taking when I went head first down the stairs). There comes a time when you have to say enough is enough! x

[GranAmie in reply to AgedCrone]

OOOh, sorry to hear that AC! No more cartwheels, OK?!?. Seriously tho', spoil yourself and rest up xox

[AgedCrone in reply to GranAmie]

Nil desperandum....as long as I can get off to the sun, I will survive!

[GranAmie in reply to AgedCrone]

one of my go to songs on bad days :). Pse let me know if msg arrive - no response tho'. x

[springcross in reply to RosieA]

I'm sorry about your Father Rosie, that must have been awful for you watching him deteriorate. Whatever is decided for you, I wish you all the best and hope that it all works out OK for you. xx

[RosieA in reply to springcross]

Thank you. It was a very agressive cancer - from diagnoisis until his death was just a month. It presents very late in its course and is one of the ones they really can't cure. I think your story illustrates how necessary it is for us to be our own advocates. Once I have finished my detective work I will feel more comfortable with any decisions. I am lucky in that my Consultant listens and shares her thinking with me and therefore respectful discussions can be had.

Have just agreed with the hospital today to stop the Hydroxychloroqine (stopped LEF a week ago) as I still have little blisters on the roof of my mouth and some small white ones on my throat. Just need to find the culprit. So its just only 5mg of steroids at present in order not to overly mask the RA prior to Biologics assessment. Who knew RA could be a full time occupation?

[Fruitandnutcase in reply to RosieA]

Or (in my case) old age would be such fun! Not!

[springcross in reply to RosieA]

Yes, it really takes over doesn't it and we don't get a say as it comes and goes whenever it feels like it.

Goodness, your poor father, it must have been so hard for him and you and the family too, particularly when there's nothing that can be done. Take care. xx

[RosieA in reply to springcross]

Thank you. Have just read interesting and reassuring article that has contributed to putting my mind at rest. Can continue to watch Foyles war now with more attention to the plot. x

[springcross in reply to RosieA]

Ah, some good news, that's really great news! 😀

[thekeys46]

Hi,

I was having Humira when I was diagnosed with breast cancer in December 2018. It had given me my quality of life back. I had to come off it during treatment. Part of my chemo though included 2 biological drugs.

In July 2019 my rheumatologist told me I shouldn’t go back on Humira but when I saw him again in November he had read up on it ( I had read same article) and agreed that I could. I had started having scleritis again and the Humira seems to be the nay thing that keeps that at bay.

My nephew and Uncle both had NHL. My nephew recently became a father😁

To me it’s about quality of life.

Good luck xx

[RosieA in reply to thekeys46]

Hi

Thank you so much for your inspiring response. Yes, life is all about balance. What a story you have to tell but you have given me some reassurance. I wonder if you can remember the article as I would love to read it. I have read, if I recall correctly, that people on Humira or its equivalents appear to have less incidence of some cancers. Who would dream that collectively we would be working their way to a medical degree!!

Many thanks xx

[thekeys46 in reply to RosieA]

Hi, just found this article on web md. I tried sending a link but it won’t let me. This wasn’t the article I read but thought it would be good for you.

Don’t be afraid. It’s quality of life that matters xx

Years ago, some early research found that certain rheumatoid arthritis (RA) drugs, especially ones called biologics, might make you more likely to get cancer. But a number of recent studies show that in general, this isn’t the case.

RA itself increases your odds of getting some types of cancer, like lymphoma. Scientists looked into whether RA drugs play a role in that increased risk. They found that chronic inflammation, not medication, is probably to blame. Some biologics may even keep cancer at bay because they keep inflammation in check.

The drugs at the heart of the cancer question are usually biologics. But scientists have also studied the possible link between cancer and disease-modifying antirheumatic drugs (DMARDs).

[RosieA in reply to thekeys46]

Yes thank you. A great synopsis of my understanding (spooky). Yes, I read an article yesterday mentioning MTX. I gather with much of the early research some of the population being investigated had established severe active disease and it was very difficult to extrapolate the level of disease activity and the biologics and cancer risk.

I am feeling calmer about the risk overall and the cherry on the cake is just getting advice on the rare cancer my father had and the one mentioned in the literature. I think my risk is quite low but it will be good to have discussed it and for me to put it to bed.

I have looked at WebMd and as you say some good articles.

I find it so reassuring to be able to access such materials, way back I was given meds (the days when you didn't even get the blurb) and nobody warned me that it could induce early menopause - it did but I thought it was just bad luck and coincidence. Years later when driving and listening to the radio I found out the link between the drug and induced menopause - you can imagine my anger and tears. Thank goodness those days are long over. xx

[thekeys46 in reply to RosieA]

The internet is wonderful for us to be able to do our own research.

When I was told I had a high grade breast cancer I thought’that’s me done for’ . With the Her2 + type that would have been the case 15 years ago but the advent of biologics and targeted therapy has changed the outcomes completely.

Xx

[RosieA in reply to thekeys46]

It is wonderful as you say. I am so pleased for you. A fantastic outcome.x