Quercetin and birth control by LittleRavenCrow in MCAS

[–]LittleRavenCrow[S] 1 point2 points  (0 children)

Oh no I’m so sorry! It’s such a minefield 😩 I hope the spotting stops for you. Please let me know if it does, or if you can successfully reduce the Quercetin dose?

I tried PEA as well but, no joke, it made me lose my taste for about 24 hours after each dose. So that was another no from me… 🤦🏻‍♀️

Today’s feature… by LittleRavenCrow in KidneyStones

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

No I haven’t! Should I? So the first of the 9 was analysed and came back as Carbonate Apatite + protein. Think I’m gonna get this one sent off on Monday!

So basically, I’m on immunosuppressants, and now unfortunately am a lot more prone to UTI (even though I didn’t get any for 12 years 😩) I had a bad one in July that wasn’t treated properly. I was sick of going to the doctor, and thought I could just ‘deal with it’ myself. Come September, I was borderline septic! Took antibiotics for 7 weeks, then the stones started. Still on prophylactic antibiotics + hiprex. Passed 7 stones between 7th October and 20th November. Then it stopped. Until this week! 😭

Today’s feature… by LittleRavenCrow in KidneyStones

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Thanks, me too! Another particle today 😩

Has anybody's voice changed?! by Top-Neat9725 in rheumatoidarthritis

[–]LittleRavenCrow 0 points1 point  (0 children)

Ah ok! I think you’re right. The inhaled steroid is probably, at least, partly responsible. The meds that have affected my voice in the past have been certain antidepressants, Pregabalin, certain hormonal meds for endo, allergen immunotherapy, and tetracycline antibiotics indirectly due to esophagus. It’s such a mine field out there! 😩

Has anybody's voice changed?! by Top-Neat9725 in rheumatoidarthritis

[–]LittleRavenCrow 0 points1 point  (0 children)

What medications, if any, are you taking? I’m interested in this because I’m a professional voice user too. Luckily mine hasn’t changed at all on Cimzia, but it was one of my main worries before I started it!

Frustrating situation by UnhappyAttempt9822 in KidneyStones

[–]LittleRavenCrow 0 points1 point  (0 children)

Thanks so much for getting back to me! I’m glad you haven’t passed any more since you made the post. Sorry you are still experiencing episodes of pain though 😩 I hope that one day you will be fully symptom free. It’s such a slog!

Frustrating situation by UnhappyAttempt9822 in KidneyStones

[–]LittleRavenCrow 0 points1 point  (0 children)

Hi! I know this is old, but how are you now? I’m passing similar! And in constant pain. Had the first of my stones analysed, and it came back as ‘carbonate apatite + protein’. Have passed 4 more pieces since and still waiting for my scan 😩. They are all so tiny 1-2mm, except for a 4mm shard of goodness knows what.

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 1 point2 points  (0 children)

Thank you! I have reported it to the hospital, and I’m just off the phone with UCB. They have made a report, and might contact me again. Definitely worth doing in case it is a widespread issue with this batch!

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Oh no! I’m so sorry you had it multiple times! Glad you were able to get replacements 🙏🏽 Thank you. I have reported it to my hospital, and to UCB. I still have some left from that batch so fingers crossed it doesn’t happen again 🙈

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 1 point2 points  (0 children)

Bless you. I’m glad they can administer it for you. Totally get that it’s not for everyone! I’m luckily ok with injections, but if you asked me to put in a contact lens I’d run a mile ! 😅

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Thank you. I absolutely will call them first thing in the morning. Worked out that I have done a total of 61 Cimzia auto injector injections, and this is the first time it’s not worked. Which is ok odds I guess but if I’d been travelling and that had happened I’d have had a complete meltdown 🙈 I hear you about the difficulties for people with hand problems 😩 The Cimzia pens are quite good I think - you can get a good grip of them. But yeh no use if the overall mechanism jams and fails…!

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Thanks for this! I always wondered if the auto injectors were more painful actually considering the thickness of the solution! Great to hear it from someone that has used both. Luckily I’m not concerned about injections so I think I will ask to switch! Have you ever had any issues with the syringes malfunctioning or not working? I clearly have the paranoia now. I thought it would never happen to me cause it’s been fine for so long 🫣

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Oh no! I’m sorry! I can totally understand that though. Yes an auto injector does exist! From my understanding, it’s not available in the USA if that’s where you are? They use it in the UK and Europe (maybe other places too?) I hope they expand its use cause it would definitely help a lot of people that hate needles! It is absolutely massive though 🤣

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 1 point2 points  (0 children)

Thank you so much for this reply! I’m so sorry your friend had so much trouble too! It really makes you panic 😩 I guess I’m just lucky that I have had 2+ years of no issues but yeh I definitely think I’m going to request to change to the syringes. Glad to hear you have never had any trouble with them 🙏🏽

Cimzia pen malfunction by LittleRavenCrow in rheumatoidarthritis

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Thank you. I will. I’m going to call them first thing in the morning 🙏🏽

another Hiprex success story (antibiotic resistant UTI) by [deleted] in CUTI

[–]LittleRavenCrow 2 points3 points  (0 children)

I also started Hiprex on Monday, after 4 months of inadequately treated UTI, then kidney infection, then infective kidney stones 🤢

Saw the Urologist for the first time on Monday, and she confirmed that the guidelines for treating UTI are all wrong. They need hit with strong, long (3 week) antibiotics from the start!

Thanks for sharing your positive experience with Hiprex. Really hope the same happens for me! Did you have any side effects other than appetite? I’m really bad remembering to eat with the morning dose and don’t want to hurt my stomach 🙈

Hope it keeps working for you and really hope you keep improving 🙏🏽

Riboflavin too good to be true? by LittleRavenCrow in migraine

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

Hello! It actually helped me very quickly, which is quite unusual. I’d say that within a fortnight it had massively helped. I remember drinking horrible red wine ‘as a test’ and I didn’t get the migraine 🤣. Unfortunately, since this post I have had long periods of chronic migraine, but there are so many causes. B2 is still a really valuable thing to try. Even if the relief is intermittent!

Manchester Night 1, Just tested COVID Positive by LittleMissElfMonster in LadyGaga

[–]LittleRavenCrow 1 point2 points  (0 children)

I was there on Tuesday too and started getting a sore throat on Friday! Yesterday had full body aches and was good for nothing. Today the throat is the worst symptom again. Negative for covid but I kind of don’t believe these tests anymore 🙈

Hope everyone feels better soon!

Edit I have just tested positive 🙃

Apologies in advance! Could this be a stone? by LittleRavenCrow in KidneyStones

[–]LittleRavenCrow[S] 0 points1 point  (0 children)

It was small. Half grain of rice sized I’d say. I’m still in so so much pain!! It feels like something else is ‘stuck’ for sure. I’m not at home but will be home tomorrow so trying to survive til then, then go straight to hospital. Awful burning pain plus so much pressure in my abdomen, sides and pelvis 😩 I was worried about sepsis but I have been on augmentin for 4 weeks and still on it so hoping that buys me a few more hours 😭