Well as it is meant to be a “New Year, New Start” when was prescribed on Leflunomide back in July believed that this would be a medication that would work fine.

Got through November to December with only having 3 chest infections (9 in total last winter) so an improvement there. But around the first week in January started to suffer with numbness down both hands during the day and especially during the night with added excruciating pain in all fingers.

One Dr checked to see if B12 levels where sufficient (am B12 deficient) – Nope this test came all good 🙂

Saw another Dr two weeks later and it was concluded I was suffering with a side effect of Leflunomide which kicks in after being on for a few months once it settles in your system. After being taken off Leflunomide and being referred back to Consultant.

https://academic.oup.com/rheumatology/article/43/6/809/2891231

The link above regarding this side effect is a very interesting read – as all the symptoms experienced by the people in the report is exactly what I have gone through!

Within a week have had a phone call from Rheumatology to let me know I need to do a medication flush to get Leflunomide out of my system quicker than the usual 6months because of the side effects.

I am now spending the next 11 days taking “cholestyramine” to wash out Leflunomide which I have to say has some nasty side effects which are not pleasant!!!

Well since the medication change in July (Finally after 20 week wait), put on Leflunomide and Prednisone (which I know some people say it is like the Devil Medication) these together have been a life saver with battling this chronic illness.

Before these two medications together I could not remember at all when was the last time that I actually slept for 9 hours straight and felt refreshed. But as usual there has to be a down point and this has resulted in my white blood count to be too high which the Doctor believes is the cause of being in Prednisone. So currently on an 8 week process of being weaned off Prednisone, which I have to say since dose lowered last week I have noticed the increase in pain, discomfort, fatigue and lack of sleep!!!!

After being weaned off lets see what this pain, discomfort and fatigue is like as back with Rheumatology around January/February time for my 6 month check up. Am currently awaiting Pain Clinic appointment but that is “how long is a piece of string” dilemma as there is currently 9 month waiting list.

Well since the end of July it has been quite a busy period and “FINALLY” back under control with medication after seeing Consultant. Awaiting pain clinic to get the pain I am feeling with the PSA under control as not many pain medications are helping.

Still on a DMARD medication – Leflunomide which does have similar qualities as Methotrexate the one downside is it is a tablet which has to be taken every day instead of the usual inject once a week. The one positive is the nausea which is a side effect has not been as prominent as when taking Methotrexate. Only get nausea spells now and again mainly when not eaten much food or drunk much fluid.

As part of all this it is the usual 6monthly check ups along with blood work every 2 weeks for 3 months (a downside as have to plan with it all) but anyone that knows me as a person knows that I am extremely organised with everything and everything I do is planned out along with being colour coded on my phone calendar so that I know where I am. Which in turn does show up on my home smart device in our Kitchen so that we are both aware with what is going on in my calendar.

Referring back to awaiting pain clinic this is a clinic which is no the quickest and you are waiting for a period of time for an appointment but in the end I know the short term of waiting will be beneficial in the end with it helping every day tasks.

When I am putting together a new post – I always try and find an inspiring quote which relates to how this illness can affect life but it will only get in the way if you let it. I don’t show that I have a chronic illness because I get on and live my life to the boundaries I know I am capable of. I do still work full time and a mummy to a 5yr old who is very active but I have a husband who is mega supportive and is always there to help and reassure me when I feel I am unable to do something. Which I know some partners don’t understand the daily issues we experience. I think what helps with my husband understanding as he comes to every hospital appointment whether it be a simple check up or a routine check up. He knows and understands I may not be able to process all the information given where as him being there, he can take it all in and if he feels there are questions to ask he will as he knows after the appointment I will remember something and want to ask it but he has already been two steps ahead.

Well it has been 13 weeks now since I had to stop taking Methotrexate (due to reoccurrence of chest infections) and oh have I noticed lately I am not on any medication.

Fatigue and stiffness in the hands and feet has been the biggest notice. I have been finding that my hands and feed are getting a lot stiffer and sore quicker, which is leading to some days being unable to move completely.

For instance – Thursday just gone I had nerves along my shoulder blades locked and muscle spasms down my spine. Which in turn resulted in both my hands clasping shut which made it difficult to eat a meal or hold a drink.

This disease is horrible and takes away you advantages of a normal life as you never know when the next flare will occur, how long it will last and how it will affect to do the simple things we take for granted.

When I am feeling good – I do try and put my mind and soul in to something to keep me occupied. My usual type of therapy to keep me going is to bake – which with the help of aids within the kitchen I am able to. I find it is my way of coping with daily stresses with this disease and something to keep me active along with brightening up a gloomy day.

Looking back on previous posts I cannot believe it has been nearly 18months since my last post, I really need to get more organised with posts now things are different.

Since my last post a lot has changed living with this illness. Since the beginning of December 2018 until April 2019, I have unfortunately suffered with 9 chest infections! I know I hear you thinking one chest infection is enough, but 9 is way too much. Each time going off Methotrexate for a few weeks to the antibiotics kick in, then back on Methotrexate then again back in to the vicious circle of coming off medication for the body to recoup and heal, constant GP visits each time.

It took until my final chest infection and following on from a chest x-ray (which showed no damage to my lungs) that the GP thought it was possibly Methotrexate causing my chest infections.

Fast Forward to today……….

I have been 11 weeks off Methotrexate and Oh My Gosh!! I have never felt so much pain and unable to do much because of this illness. Every day chores are a challenge!! I am trying my best not to be reliant on pain killers to ease the pain just try and ensure I don’t over do things and rest when needed to ( my body has its way of telling me)

Due to being off Methotrexate, it does mean that I am back on the waiting list to see my Rheumatologist to look at other medication that can be taken to help with this horrible illness. So the aches, pains, stiffness and everything else that comes with Rheumatoid Psoriatic Arthritis is back with a vengeance. Hands are the worse as the cuticle skin is constantly trying to shred and bleed.

Well I must apologise that I have not been around for a few months.

The last few months have been full of ups and downs, now my illness is under control with methotrexate my rheumatologist has said I do not need to see them for a while now unless I have a drastic flare.

It is lovely to feel everything is under control at last 😁😁😁

Christmas and New Year is always a manic time especially with a 3 yr old who is always on the go. She does brighten up every day though especially as she was born premature she has been signed off with doctors as she is the same as any other children age.

My husband and I though have made a massive decision and we have started the process of adoption. It is a long and emotional process but the thought of given a child a loving home and bring part of a loving family makes it all worth while. This hasn’t been an easy decision but for the long term we know it’s the best as with my condition it is not fair to put our family through added pressure and for myself to be even more reliant on them if I did end up in permanent flares.