Weeks 7 & 8 on antibiotics 😩

[Fennella02]

For those who have seen my posts about my 4 month old infected insect bite and subsequent cellulitis, today’s review appt with my GP didn’t go quite as well as I’d hoped.

It’s improving but isn’t improved enough to come off the antibiotics yet unfortunately. It appears that no one has reported on my X-ray yet (nearly 4 weeks since it was taken) and I have a hard raised area over the tibia. I would have expected more pain if the bone is infected but my GP is going to chase that today.

I’d quite like to swap these big yellow tablets for my usual big purple Cellcept ones - I never thought I’d hear myself saying that!

[Wendy39]

Hello Clareb67

Sorry to read your post. How frustrating. Are you going to chase up your GP to make sure he's chased up your x-ray? 4 weeks is a long time to wait isn't it. Have you been off your cellcept for those 7/8 weeks? Are you really feeling it now?

Wendy x

[Fennella02 in reply to Wendy39]

Hi Wendy

I'm lucky to have a fabulously conscientious GP who won't need chasing. She'll come right back to me as soon as she has an answer. I must confess to being slightly concerned that the infection seemed more located away from the bone yet the distinctly raised hard area (say 2" x 2") is slightly distanced from the 'wound' and seems totally stuck to the shin area. The other side of the infected area is soft and normal. If it is an infected bone then I shall be thanking her for the enormous doses of antibiotics I've been consuming since early September! If thatvxray has just been sitting unnoticed in someone's inbox since 13/10 then I shall be most unhappy.

I've been off the Mycophenolate for over a month and at first I loved it - no pills, no bloods etc! I even contemplated not going back on them but alas I'm beginning to feel the need for those purple torpedoes . . .

Many thanks for replying, it's dragging on a bit now - especially as we don't know exactly what caused the infection in the first place.

Hope you're keeping warm in these chilly temps - warm and wet tomorrow 🙁🙁 xxx

[Wendy39 in reply to Fennella02]

Colder today and windy now too! I am feeling the temperature dropping. We've been spoilt, it's been so mild.

Children went back to school after half term Holidays today and so I've had a slower day and a nap this afternoon - much needed.

I really hope you get to the bottom of this very soon. It's seems a long time with no real answers and a query re infected bone. Let's hope it's not that!

Keep us posted.

Wendy x

[Fennella02 in reply to Wendy39]

Thanks Wendy. It’s certainly been something that I’ve never experienced before. It was so trivial initially that I ignored it for 2 months - this is probably where I went wrong ....

I will feel reassured when I know for sure that someone has looked at the X-ray - I’ll let you know when I hear back xx

[Wendy39 in reply to Fennella02]

Yes, please do. x

[weathervane]

Hi clare , I remember when you first mentioned the bite , its hard to believe thats its not healed yet ! Twitchytoes mentioned that you were having problems with your white cell count as well , is that one of the reasons that it hasn’t healed yet . My White cell count has been very low but so far I have managed to avoid infections . I will keep my fingers crossed that all is fine with your x-ray , best wishes xx

[Fennella02 in reply to weathervane]

Hi weathervane.

I always struggle with my wbc - it generally hovers at 2.2 - 2.5 but I seem to have better infection resistance than most. I’m very careful to avoid crowded places where bugs thrive - generally I’m at home and out in the fresh air as much as possible - I believe this makes a big difference.

This bite-thingey has become a real saga. I think it’s probably on it’s way now - albeit slowly but my gp is treading very cautiously.

I think my immune system must have given up on me or this type of thing would never have taken hold. I’ll be interested to see what my bloods are doing once all traces of systemic infection are gone. Have your bloods recovered lately? XX

[weathervane]

It has been a bit of a struggle for you these last months, hopefully things are improving. I follow the same protocol to try and avoid infections, my wbc has been up and down week by as gp has had me in weekly , i think she has been making a bit of a fuss about it all . At the moment its up again and i feel ok as tiredness has settled a bit but still don’t know if I should start plaquenil again. Still Waiting to hear from Nurse . Was your wbc low before you started treatment so low maybe the baseline??

[Fennella02 in reply to weathervane]

I firmly believe (as does anyone medical who knows my case) that my low wbc is due to lupus activity rather than any deleterious effect of the Mycophenolate. In fact, my rheumy fully expected it to rise once I was properly established on the myco but I think that may not happen after all . . My gp gets edgy about it but the lupus professor was unmoved so long as it didn't give rise to infection predisposition - and until now, it hasn't!

I think wbc of 2 or neutrophils under 1 is the cutoff point at which my GP has said she would be withdrawing dmards and referring the problem back to the hospital but that hasn't happened.

Are you feeling the withdrawal of the Hydroxychloroquine? Xx

[weathervane in reply to Fennella02]

I agree I think my low wbc is due to the sjogrens. I have been well🤞🏻Apart from some oral thrush, i was tired and achy when hydroxy was stopped but that appears to be easing. Im a bit worried about the hydroxy whether i need to go back on it which is why i wanted the rheumys advise , I don’t want to quit meds willy nilly ! What is a girl to do LOL

[leslieliesel]

Oh dear, I am sorry you are going through this...Please be the squeaky wheel...One has to stand up and make sure the Dr pays attention..I know it is not comfortable to feel as if you are pestering the busy Dr...he/she has many patients ...You only have one You!!.. Usually I am very trusting of Drs...but I have had a couple of cancers...if I didn't persist, well, who knows if I'd even be writing this...yea!! I lived long enough to get Lupus too!!!....So please "pester" you Drs until you get your answer....That is a very long time to be on antibiotics.

xx

[Fennella02 in reply to leslieliesel]

It is a long time, isn't it? I suspect I will have an answer from my GP by tomorrow - if she can galvanise radiology into action! I'm not really expecting an unfavourable result but perhaps I'm being too complacent .... Many thanks for your words of support x

[misty14]

Hi Clareb

Sorry to read that your cellulitis check didn't go as well as expected. Good luck for XRay result, that should have been chased sooner. Do hope your not suffering too much off Myco.!. Keep us posted and fingers tightly crossed for you. X

[Fennella02 in reply to misty14]

Thanks so much Misty. These next two weeks of antibiotics are a big disappointment - I absolutely did not expect to need more. She wants me to stay on them and off the myco until it is completely healed over. Lower legs aren't known for their efficient healing and mine has taken some knocks along the way

I hope you're keeping well at the moment? I was down your way on Saturday - my goodness it was cold! We Somerset softies were conspicuous with our shivering in your coastal wind. Brrrrr!

[Bebe76]

Eight weeks on antibiotics is a long time. Are they working even a little bit? Has the doctor tried a different type of antiobiotic to see if it would work better? Good luck chasing down your X-ray, it's unbelievable that you have had to wait so long.

[Fennella02 in reply to Bebe76]

Thanks Bebe76 . The antibiotics are the right ones for the bacteria that they have grown on culture - I've had it swabbed twice and yes, they are working and I don't feel that I need 2 more weeks. Especially as I'm on a belting high dose.

I'm hoping to hear about my X-rays tomorrow. I think everyone has assumed that someone else is dealing with 'that". I know that routine rheumatology X-rays take 6 months+ to be reported on at my local hospital whereas those requested by the GP take 48 hours - something is surely wrong there?

I'll let you know x

[Fennella02]

So, the GP surgery has just called to say that my X-ray has finally been looked at and the good news is that it all looks normal. A great relief to know for sure. There are no clues as to what this bulge on my shin actually is but hopefully it will settle down with time - ironically I didn't have the bulge when this X-ray was taken, just the diffuse swelling of the cellulitis.

I'm looking forward to an uneventful and speedy end to this infection 🙂

[Wendy39 in reply to Fennella02]

That is good news. But you still need to shift this infection. I really hope the antibiotics clear this up now. Otherwise back to the GP again for you. Good luck. Xx

[Fennella02 in reply to Wendy39]

Thanks Wendy. I hope I will never consider myself immortal again! I can generally chase bugs off pretty quickly but I think that if they take hold then I’m pretty rubbish. I intervened in a dog fight 2 years ago and one of the more superficial lesions festered gently for a good couple of months. I need to respect the Mycophenolate and my low wbc more in future.

Take care xx

[Wendy39 in reply to Fennella02]

You too! X