This is the 5th Drug Therapy I have tried, and I want to share my experience to support others facing a similar story and to raise awareness of this treatment use for Crohns.
Before I started Rinvoq (Upadacitinib) I had recently failed Azathioprine as it gave me Hepatitis of the Liver. I have previously been on Infliximab, Humeria and Stelara and whilst Rinvoq is not an immune suppressant, it has similar effect on the disease and comes with as many, if not even more risks.
I had done my research and actually left a Facebook support group for Rinvoq before starting it as the stories I was hearing were frightening and making me doubt agreeing to trial it. I had had several courses of steroids in the last year, so it was defiantly time to crack the disease and fight to get my health back on track!
I was advised to get my vaccinations up to date and be given the Shingles Vaccine as I had already had Shingles and it is a severe risk of complications with Rinvoq. My GP was very supportive and arranged all that was required, including screening bloods for TB and a full blood levels.
I met with an IBD Specialist Pharmacist and underwent assessment before I was given the first 3 months to try.
The Pre Assessment
The assessment was very daunting as the Pharmacist went over all of the risks associated with Rinvoq, these included:
VTE (venous thromboembolism - a blood clot that blocks a vein)
She advised me to seek urgent medical attention if I experienced any of the following:
Sudden shortness of breath or difficulty in breathing,
Chest pain or pain in the upper back.
Swelling in the leg or arm or leg pain and tenderness or any redness or discolouration while taking Rinvoq.
Now that list was scary to say the least but not the end of the warnings, I needed to look out for any evidence of shingles and maintain my vaccinations to Covid and seasonal flu and to get the 5 yearly Pneumococcal vaccine. I also needed to be cautious around sick people as the Rinvoq made me not only more receptacle to catching bugs, it makes it a lot harder to recover from them and even a common cold could lead to serious other complications such as Pneumonia and infections as it lowers the bodies ability to fight things.
The Pharmacist took my weight and observations for reference and then set up my deliveries via a social prescribing agreement. They will send me supplies each month following a prescription from the Hospital after my reviews.
I was advised I would need strict blood monitoring monthly for 3 months then every 3 months to review any negative impact the Rinvoq may be having. This is especially important as it can cause high cholesterol and effect Liver Function as well as other issues not mentioned.
We booked a 10-week review, and I went on my way,
I started the treatment the next day, 1 pill a day which I took in the morning or 45mg as I was on a loading dose for 12 weeks!
3 weeks in
My side effects were starting to show, I had spots appearing on my scalp and knowing it can cause Folliculitis and Acne of the scalp, I wasn’t too shocked, however I was also now suffering Oral Thrush in my mouth and throat as well as feeling very run down, fatigued and generally groggy. On the plus side my stomach was gradually becoming less painful, and my output was showing signs of slowing down. I had no changes in my joint pain but stayed hopeful!
Week 4
Weirdly noticed some of my tattoo ink was looking a little patchy. I had heard of ink rejection with this type of therapy but didn’t believe it!
Spring was in the air as it was now March, and I was itching to get out on my bike. My fatigue was relentless, but I made myself and it felt good to be out!
My stomach was still settling a little day by day by the exhaustion is real! Short cycle and I came back for a nap!
As you may tell from the photo, I will so chuffed with myself, my husband said I had smilled the whole way.
Week 5
I was booked in to get a fatty Lipoma removed from my back, I had been advised that as it was a minor op, I didn’t need to stop the Rinvoq.
I was still fighting oral Thrush and on Nystatin, this meant I was not allowed to have a general anaesthetic as they didn’t want to put in a breathing tube and risk spreading the thrush! I had several local injections but OMG it still hurt like hell!
The days following the op I had a cold and was feeling rubbish, I was now on Fluconazole for the Thrush, and it was all making me feel really run down.
The acne on my scalp was now very uncomfortable, I researched and started using Nizoral shampoo which helped ease it thankfully, but it didn’t go.
Week 8
The fatigue had really hit now, we decided to take a few days away from it all and went on a last-minute trip to Mallorca, just what I needed, a little warmth and a chill out!
I started eating all the lovely fresh foods on offer at our hotel, thinking my stomach was more settled now I munched on salads and fruit! Paid for that by being in a lot of pain for 2 of the 4 days we were there. Guess I got a little carried away and the Rinvoq hadn’t done enough to handle that!
Week 9
The weight gain started! I gained about half a stone in the 2 mths on Rinvoq so far… I did not need to gain any, I was trying to lose it by walking each day as much as I could.
I started the good old reliable 'white food -easy digest diet' which basically for me consists or bread, chicken, rice, well cooked veg and apples and some dairy.. I also add a few of the regular FODMAP items in but NO Skins, grains, seeds or red meat, which had helped me heal in the past and whilst it was not good for weight gain, my abdominal pain was still bad, so it needed a rest. I was losing faith in the Rinvoq by now and still fighting Thrush!
Review at 10 Weeks
Another partial blockage, I was gutted as that was what all this was meant to stop… if the inflammation went down, I was less likely to struggle as much. I used the good old coke and heat pack remedy and it eased thankfully.
My blood results were now showing a rise in my Liver Function, and I was getting swollen ankles from water retention.
Acne was the norm now and I was suffering with a sore, inflamed scalp.
My arthritis was no better yet, time for the review.
I had a telephone consultation with the Specialist Pharmacist from St Marks Hospital.
Dose to be reduced to 30mg at 12 weeks. This is the maintenance level I will maintain.
Week 13
Today I started the reduced dose of Rinvoq as the Pharmacist explained it is not proven to be any more beneficial to stay on 45mg after 12 weeks as it is 30mg!
It is finally helping my Crohns Yipee! Emptying about 6 times a day and once at night! First time in years and I even slept through one night which is honestly the first time since my first surgery in 2016!
3-6 Months How I am doing
My abdomen pain is easing, and I no longer feel like I have internal bruising, just tenderness.
My joints still hurt regularly but now if they swell it reduces overnight, not weeks later as it used to.
However, 10 weeks of Folliculitis/acne on my scalp and occasionally on my face.
Gained a few more pounds but balancing out.
Some hair loss but I had that with all other treatments as well.
LFT fluctuating but not excessive and Cholesterol ok but higher than was pretreatment.
On the whole I am better than I have been for a few years now, not fixed but showing positive signs I may be well one day.
We went on a 11-day trip in our campervan to Scotland and the Lakes District, something I was anxious about as I needed to empty my bag so much, but now it’s manageable and my pain is easing so its all go go go!
I managed to climb my first mountain in years, it was exhilarating as the video will show 😊
One issue I am finding is that my stomach is less tolerant, I have always enjoyed a glass of wine or two but now if I exceed that, I spend the next day being sick and not just a little, so guess my bodies way of telling me to not do it which is frustrating as I have few guilty pleasures and now one less!
NOW at 6 Months
I am now at 6 month or Rinvoq and although I question its benefits v the acne on my scalp, now being treated by Oxytetracycline antibiotic, and the constant hunger adding to my weight gain. It is proving to be a good treatment for me.
Next month I start a new job and will be full time for the first time in 20 years with the provision I can reduce if I struggle.
The fatigue is my biggest enemy right now and my blood pressure and cholesterol are higher than they have been for me so I may need yet another medication to manage the side effects of Rinvoq, but for now the benefits are outweighing the bad effects so I guess I will plod on and hope it just gets better as I go!
My bloods have been monitored along the way and I have charted they results for the LFT and Cholesterol as below.
My blood pressure is now high so I am now having that monitored and its hard to say if it is the Cholesterol raising it or the fact I am Perimenopausal and have hormone migraines, this is currently under investigation to determine the cause and hopefully find a solution.
Rinvoq has greatly improved my quality of life, the Crohns is better managed, and my joints heal faster if I exert myself and they swell.
I hope by sharing this in-depth journey, it helps answer a few questions you may have. I thought many times It was no longer working for me but reading this back, reminds me how far I have come and how much it has given me back!
Sadly since writing this blog, i have now been taken off Rinvoq as i was getting raised Liver Function test results and had a dilated renal pelvis on my right kidney. It is unknown if this is a direct result of the treatment but the symptoms were still niggling away and the side effects on my body no longer meant it was safe for me. unfortunately i became very ill 2 weeks later which showed it was working just maybe not enough for the risks... I am now in assessment to start yet another biologic, probably Skirizi but need my Liver to repair first!
Please do ask me anything you feel I can help with and as always this is just my account, I am not medically trained and always seek medical advice if concerned about any issues you are having.
Thank you for taking the time to read this and follow me on my journey!
With love
Andrea
Stoma Warrior
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