Raging but all is hunky dory!

[Jaxine]

I finally got an appointment to see my consultant yesterday ( albeit a new consultant) this exchange took place in the radiology room whilst having my hands xrayed. The consultant unfortunately did not have my full notes so I had to fill in the blanks. The opnosis being, my previous weeks bloods came back with a reading of reduced white blood cells my inflammation levels were not high and my scan showed no deterioration either. Well I'll be dammed! I'm struggling walking, my finger joints swollen, bruised and raging. I can hardly draw a fist, open a water bottle, squeeze a dish cloth......I have bones protruding everywhere, yet everything looks hunky dory!

I've been put on a 4 week course of steroids and the plan to start me on Olumiant. I've looked at the side effects of this drug and I'm not happy. I have a history UTI s which whilst my RA is raging living with the debilitating effects of continuous UTI s is not a pleasant thought. I have only tried 2 biologics and would rather be offered another type before this course of treatment. I however am not able to supplement a biologic with a Dmard. So my question is does anyone have experience of taking this drug?

We were supposed to be travelling to Majorca on Friday self isolating at my daughters villa for one week and taking full precautions. However i thought travelling would be Ill advised however, my consultant felt if i give blood again and there is an approved increase in my white cells i could go, and start my steroid treatment on return. She rang me this morning to convey white blood cells have improved however, changed her mind and does not recommend travel. I had already cancelled travel! Crazy to even think of travelling with a suppressed immune system and wonky painful joints. Much to the distress of my daughter who just doesn't understand!

Anyway sorry ranting away!

[Pippy25]

So sorry to hear of your situation. Everything feels like it's in a state of flux at the moment and lots of U turns, changes in decisions re differing medical services in different areas and treatments/ meds , to travel or not, measures put in place lifted. It's no wonder we are confused and don't apologise about ranting as I think it is the only thing to do when presented with all these dilemmas and stress we are under. Take care and sending some good wishes to you.

[Jaxine in reply to Pippy25]

Thank you Pippy. I am generally very positive and embrace and accept but it s a challenge to say the least. It s wonderful to get a medication that works to feel alive again, only to have that feeling of broken as the meds stop working. Yet another path to endure , but as time goes on it it can be hard to remain positive. Really not happy about 4 weeks of pre and starting olumiant, maybe I will ask for something different! Take care x

[Pippy25 in reply to Jaxine]

Hope things work out for you and start to improve so you can get back on the right path again. Keep strong.

[Jaxine in reply to Pippy25]

Thank you Pippy

[Hidden]

I’m starting baricitnib ( olumiant) soon . I try not to worry about side effects. If it doesn’t suit or work then at least I tried and on to the next drug. . There has got to be one for me

[Jaxine in reply to Hidden]

My only worry is that I suffered UT I s for 20 years, a debilitating experience where I had to be hospitalized often. I also have asthma and very bad sinuses so this drug is not the right drug for me. I think after 18 months of living with RA I have decided to think about what I think also is the right journey of medication I wish to take, I'm going to carry on with my biologics ' better the devil you know' I have had no side effects on Humiri. Maybe with every drug however good, we will always experience flares. But good luck let me know how it goes x

[Hidden in reply to Jaxine]

That is a worry we often have to remind them we know our bodies . Good luck

[Jaxine in reply to Hidden]

Yes exackly.

[Oshgosh]

Rant away,we are here to listen.

[Jaxine in reply to Oshgosh]

Thank you Oshgash. Love the name!

[Summerrain14]

I’m sorry to hear how things are at the moment and that you really didn’t have the opportunity to discuss your concerns with the consultant about the choice of biologic understandably so. Do you have a rheumatology like you can contact or nurse to discuss your concerns?

Not being able to travel and having such awful pain and another medication change is an awful lot to be dealing with too. I have no experience of this medication but please do rant away to us any time. x

[Jaxine in reply to Summerrain14]

Hi Summerain,

Thank you for your message. I'm feeling rather beaten at the moment, I have to admit to having a huge cry about it all too. Whenever I ask about a medication change I always get the same answer ' there is no good or bad medication' it s literally trial and error. I really didn't think it would take this long! So fed up! X

[Hidden in reply to Jaxine]

Jaxine I am in the same boat been a year of MTX not working and then sulfasalazine and the low mood sulfasalazine got me too has meant this morning I had to say enough is enough. I just feel life is passing me by and now with work I feel I am under pressure all the time to find a drug that works and makes me feel I can work again.

I have cried more in the past 2 weeks than the whole year and this is not how I am as a person.

I get there is no quick fix as told by Doctors etc but when you see how your life changes and no relief it is hard to get your head round it all.

[Jaxine in reply to Hidden]

Hi Deeb,

We literally are in the same boat! I am generally so positive and cheery but for the last week I just cant stop crying I'm just utterly fed up of it all. It s been 18 months a nd I still can't get controlled properly. We booked holiday a year ago, all my 4 children and their children are going it was going to be a blast and now obviously I can t go. Life can be so shite at time with this discusting disease. Hopefully they will put on biologics now, so many do do well on them, I love Humiri no side effects but after 9 months stopped working as well. But I'm going to take another injection and hope that this few weeks is just a raging flare. X

[Angjoplin]

I'm on olumiant at the moment. Its been brilliant for me. Non of the biologics worked for me. Mainly because I seem to be allergic to all the preservatives in the injections.

I too am susceptible to UTI's. Touch wood I haven't had a single one since taking it. Been on it about 6 months.

Of course it's up to you what drugs you decide are best for you. But I really wish I'd been offered it earlier.

Good luck.

[Jaxine in reply to Angjoplin]

Wow that s great news and gives me hope. I really so very much want something to work. Humiri was brilliant, no side effects and great for my RA but only lasted 10 months. Seems my RA is more aggressive than I thought, I really have no idea. I should give it a try, why dont they offer this before the injections I'm assuming the injections are more expensive! X

[Bunterface]

Hi Jaxine, if you already have a history of UTIs, then I would personally think twice about Olumiant/Baricitinib. I was taking the drug for some time last year, resulting in 2 quite severe UTIs. I quit Olumiant at the start of this year and I feel so much better for doing so. It played havoc with my 'plumbing' and there is a warning, as such, in the lengthy side effects list with the drug. We are all different and we all react differently to specific drugs, but because of how it affected me with 2 UTIs, I wouldn't touch Olumiant again. Best wishes. Xx

[Jaxine in reply to Bunterface]

Thank you that helps me hugely you have no idea. I've already rehearsed my speech at length to my consultant when she rings me ( she s on holiday at the moment) I also have asthma and sinusitis so it s mad they even considering putting me on it. UTI a are the most debilitating condition, spending weeks in hospital with them literally passing blood they were so bad! Sorry for being graphic, but thank you for your message. X

[Sheila_G]

So sorry you are in such a difficult situation. Feel free to rant any time you like. I hope your situation improves soon. x

[Jaxine in reply to Sheila_G]

Thanks Sheila so do I!🤞 x

[Green230461]

I have been on it for six weeks first bloodwork in a fortnight. No side effects but no improvement either yet. Anything better than not being able to get into the shower on my own! Take the jump I have been told

By nurse it leaves body quickly if it causes problems. Good luck

[Jaxine in reply to Green230461]

Yes I read that it s defo good to have an escape route! 😂

[Kags1068]

Hi Jaxine

I'm so sorry to hear you are still having such a rough time. It really has all been a bit of a nightmare for you hasn't it?

I'm afraid I don't particularly have any useful advice, just that I feel for you. All we want is to feel a bit better and at times like this it can feel so very far out of reach.

It's so frustrating when you know things are bad but you're told either the bloods are ok, or nothing obvious is showing up on scans, etc. It really doesn't help when the docs don't know you and have no frame of reference for what is and isn't normal. We feel like we have to justify ourselves somehow. So tiring and upsetting. Rant away - it's perfectly understandable.

Last week I had my first phone chat with a new Consultant (only my 3rd Consultant in 38 years). He was only interested in my medication and how in his opinion I was on too much. Didn't have a clue why I was on so much (eye complications) or about my multiple orthopaedic surgeries, eye surgeries, stress fractures and discoid lupus. Just kept saying 'I wasn't aware of that.' I know no-one's perfect but God, it leaves you feeling very fed-up as they're making judgements without knowing anything about you. So, so exhausting battling against all that.

Anyway, I hope the steroids give you some relief although I know it's only a band aid effect (Hopefully better than nothing). With regard to the Olumiant don't be pushed into it unless you feel entirely happy and reassured. Also, keep reminding them about your horrible UTI's etc because as my recent experience has reminded me yet again, they are not always aware or taking on board things about us that they should probably know. It's hard but I'm sure you will do your best to stay strong.

I'm sorry about your holiday too.

Best Wishes 🤞😊

[Jaxine]

Hi Kags,

Thank you for your message. Yes I'm just fed up of the whole thing. But you're right I am the king of my own journey and I know so very well what I can and cannot endure. I feel for those who have n8 choice in their medication to combat their illness/ disease, but for however long I can be in charge of my own destiny with my meds I would like to have complete autonomy over it. You seem to battling your own hardious journey yourself. Take care and thank you x

[Kags1068 in reply to Jaxine]

you are very welcome - we all seem to hit the same bumps with regards to treatments & docs etc, don't we?

I'm sure you will stay in control of your condition - you sound very capable and determined. I still fall into the trap of doubting myself when a medical type doesn't seem to take on board what I say, even though time and again I have been right. Try not to do this and doubt yourself on symptoms etc - trust in your certainty. It can save many irritating hours of second guessing yourself.

Onwards and upwards (yet again), eh?!😉

[Jaxine]

You are so right kags, I literally do doubt myself at times. At the beginning ning of my RA journey I was so vulnerable and put my whole body out to be dissected! I would have taken rat poisoning to get rid of the debilitating pain. But now 18 months on I'm thinking back to my social work days. Unless you have lived with social deprivation how would I know what that is like! My degree was all text book stuff. I'm assuming ( not being judgemental) as is our medical team, however they may also suffer from the same condition! If not it s all about their academic journey. So we have to be the master in our journey. I studied psychotherapy and counselling doc/professor for 3 years. I gave up as my mother got cancer, my father dementia and I diagnosed with RA. So yes I'm always sceptical, never judgemental and just want relief! Gosh going on a rant here! Bless you x